Prayers Needed for my son in ICU
Aug 11, 2017 21:18:47 GMT
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birdgate, iamkristinl16, and 10 more like this
Post by canadianscrappergirl on Aug 11, 2017 21:18:47 GMT
I could really use all your prayers and good thoughts for my son Spencer peas!!
My son went to emerg with symptoms of a blocked shunt. He literally was fine and going to work and became ill. He was ambulanced to a bigger center and admitted.
Left him last night seemed a bit better and told him I'd see him this a.m. We live about 2 hrs away from hospital he's in.
Got a call this morning that he was found being non responsive and had a blown pupil.
They had to intubate him. He's not woke up yet. Had to externalize his shunt. Took him to ICU.
I'm praying like i never have before. Waiting for some more tests. Listened in on rounds where they are discussing the plan for him. It's so much to take in and so scary how fast things went south.
Sitting here beside him just praying and hoping that my guy gets better!!
I believe in the power of the prayers, thank you peas!
UPDATE **
Thank you everyone!
They had to get him ready for a CT scan for neuro and then a imaging test on his belly to see where the block is and if there's a cyst again. They had to insert some contrast in his belly. So I'm in waiting area for family for the next hr or so well the tests are done and then when they get him settled back in his room.
Your messages mean so much!
Spencer is 22 and he had a shunt revision done at end of June. He's had a lifetime of medical concerns and procedures and he is a tough little guy.
It is very scary and I think I'm in shock. I go between crying my eyes out and then sitting there in a daze.
They are worried about pneumonia because he asperated.
They had to give him a sedative for all the tests coming up because he has to be still for them. So this will slow down him waking it's so frustrating I just need him to open his eyes.
His nurse said he will have the breathing tube until at least tomorrow at the earliest.
They didn't want to worry me but they said at some point they may have to investigate for any permanent damage to neuro function because they don't know for sure how long he was unresponsive for.
I'm only updating you all because otherwise I'd be in the corner of the icu waiting room in a fetal position.
Thank you everyone it means so much to me that you care for my son and are lifting him up. It brings tears to my eyes and warms my heart with every message!!
I will update you again later hopefully with some good news.
UPDATE 2**
I'm overwhelmed by all your kind words, messages, thoughts and prayers for Spencer and all of us!
2 of his brothers and dad came tonight to see him. It was hard to see my boys so upset but I'm glad they came. It was really hard calling my oldest he lives 12 hrs away and had just been down last weekend and came and had a visit with us. He feels so lost being so far away.
The CT scan they did today showed his ventricles are smaller which is good.
They turned down the vent from 60% to 40% his blood gasses look good so far.
Everyone has left so it's just me and him. He seemed to be responding when everyone was here. I told him if he wanted to know what happened on Big Brother last night he had to wake up, he's a huge fan. His hand moved so I'm taking it as a good sign. I'll probably stay another half hr and head home.
Thank you again all so much, your support is really helping me to face this I've been reading your messages all day and they are like a huge hug for us, love to you all!
UPDATE 3**
They just took Spencer for a MRI because he still hasn't woke up. They are looking at his brain to see if there is a reason for it.
I am so scared in talking to the Dr's they don't seem very optimistic
I'm praying and hoping like I never have for something positive
UPDATE #4
Just an update.
I talked to the neurosurgeon and another doctor on his team and although they don't have the official report they don't see anything on the MRI. They did the MRI to see there is something with his brain that is preventing him from waking up so that is good!
Now they are going to increase the amount of cerebral spinal fluid they are draining because they are thinking that although they initially drained a lot they think maybe they need to increase the amount. So they just took off 30 cc to start and will increase it from the 10 it was at to 15 per time period.
They are going to start him on antibiotics because they see his heart rate increasing and he seems clammy. They are concerned about pneumonia.
They decreased his vent from 40% to 30% O2.
He did try to lift his head a few times while I talk to him.
I am reading all your prayers and messages to him!
Thank you so so very much for your support!! You have no idea how much your words have comforted me and brought me some peace during this ordeal!!
Praying and hoping the next time I update you it's to tell you he's awake and off the ventilator!
UPDATE #5
Since they drained more fluid he opened his eyes 3 times while his dad was here about 4 or 5 hours ago.
A few minutes ago I was talking to him and caressing his head and he opened his eyes over and over again when I said stay awake open your eyes. i feel it's encouraging but the nurse seems to give the impression it was nothing.
My emotions are all over the place I just want someone to say yes it's definitely working he's waking up.
I felt so excited and now I feel so disheartened. I just need a miracle.
UPDATE #6
UPDATE!
When I got to hospital the nurse told me not only is Spencer opening his eyes more but is able to give thumbs up and squeezed her hand when asked. I seriously wanted to hug her!!
He has continued to do this for me and seemed to understand his brothers voice when he called from where he lives which is 12 hrs away.
He also tried to stay awake while his dad and youngest brother came as well as his uncle and family.
When I talk to him I keep reminding him where he is and that he's ok he just needs to try and stay awake longer and not to worry about why he can't talk yet. His brother was holding his hand while I was telling him this and he said that he squeezed his hand several times while I told him. I can't even imagine how scared he is waking up and not knowing how you got where you're at.
He has squeezed my hand numerous times and when asked to squeeze it harder can really grip my hand.
I'm playing some of his favorite music for him and they have tried sitting him up more too.
They have adjusted his vent even more he is doing most of the work.
They won't remove the tube until he is more awake I'm thinking it will be a few days.
He has a long way to go there is no doubt! We are making baby steps but we are going in the right direction!
Please continue to lift him in prayer he has a battle ahead of him and a surgery he will still have to face but he's strong and I believe in the power of the Peas!
Thank you for all your support and love you all astound me with your concern!
I'll keep you all updated!
UPDATE #7
Spencer is sleeping now I'm just sitting feeling more hopeful as the day progressed.
He had several visitors his dad and youngest brother came for a few hrs. His grandma came for a long visit and his uncle who lives not too far away came this morning.
Spencer really seemed to respond to his uncle it was great to see!
His uncle came back tonight. He is a calgary city police officer and came in his uniform and again he really responded to him. He told him he'd take him for a Peter's Burger and for a ride in his squad car and asked if he'd like that and he nodded yes. Just so great to see him more alert! He perked up later this evening when I put the tv remote/speaker by his ear while Big brother was on.
Tonight the respiratory therapist on the night shift was so happy and excited when she heard he was more alert! She was his RT that 1st day. She stayed and chatted for several minutes and told me her sister at one time owned a resturant in the town just down the road from our town. She then said I gotta tell you Spencer is just the cutest patient I've ever had. She jokingly said if she was 20 years younger and we had a laugh. She said I just feel he has a great spirit. I then went on to tell her some things about him. She then said she'd be off for the next 4 days and said if he got moved before she came back she wanted to go chat with him because she just needed to hear his voice. I then showed her a photo of him and she said you can totally see he is a awesome kid!
All the nurses/RT/doctors have been so great!
Thank you for all your messages/shared experiences and prayers and encouraging posts I read them over and over throughout the day, they give me strength and help me face this feeling more powerful!
I wish I could respond to each and everyone of them!!
I'm going to add a photo of Spencer so you can add a face to the young man who has my heart.
UPDATE #8
Today is the 1 step forward 2 back day.
After I left last night I was so tired got a hotel room for a while now that drive is just too long and i do too much thinking while on that drive.
When I got there they said I now have to gown and glove up because his sputum tested positive for the MRSA bug. This is more precautionary then anything.
They then said they wanted to try removing the breathing tube that was exciting to hear!
Unfortunately he wasn't able to sustain good breathing when it was removed. He's too weak to cough out all the secretions. So they intubate him again.
They used a larger tube when he was found unresponsive and in hindsight should have used a smaller one because he is so small for his age. Time was of the essence though. They don't feel his chords are swollen it's just the not being able to cough up that crap. So they now have used a smaller tube.
Unfortunately they had to give a bit of sedative and it really wore him out to go through that so his periods of awake time seem fewer between.
We did do a video call with his brother in BC today that perked him up. After I'm done getting a quick bite at cafeteria we're going to do a video call with our dogs he really misses them!
He is more responsive as far as nodding etc but I had to use my mom voice today to get him to try and turn and lift his head.
It will be at least another 48 hrs before they will even think about removing breathing tube.
I just want to tell you all how much your concern and prayers and support means to me!
When situations like this happen you really find out who your support will be and I have been so disappointed by a few friends.
So when I need support or am feeling down I swipe my tap talk app and find all I need from you fabulous peas!!
UPDATE #9
The cover nurse just came in to do a few things while his assigned nurse is on break. The cover nurse said I have to tell you how honored I am to work with your son the past 2 evenings. She said she helped his nurse last night reposition him and as she held him she felt a light and aurora from him. She is a Buddhist and practices meditation and that she just feels like he is a pure spirit. She said she can feel his aurora in the room.
Even so ill this kid amazes and humbles me!!
UPDATE #10
UPDATE
Today was a less stressful day for Spencer. Yesterday was a hard for him going through another intubation.
Today during the rounds I asked a few questions. One was are we pushing too hard with him. He is alert when responses are needed and makes appropriate ones. Yes his stretches of staying awake aren't as long as they should be but his little body has gone through a lot. They said that they are happy with his progress no it isn't as fast as they would like but it's steady. They said they will always listen to a parent/family member as they know the patient best.
I think it is slow and steady for him.
Today he responded more with head nods and shakes. He responded to his uncles visit and was happy to see his dad and later with his call goodnight he was really trying to respond.
The intensivist who is a Dr with 12 yrs of training yes 12 yrs said that he is pushing the neurosurgeon to operate soon to replace his shunt because the longer we wait they worry about infection. He told he he would circumvent the normal channels and let them know his feelings on the surgery being done sooner. Later that day he told me the neurosurgeon would be there to talk to me tomorrow. I don't really care for this neurosurgeon his bedside manner wasn't great when he operated on Spencer 3 yrs ago. I will be telling him that I expect better communication this time.
This time he will have a different type of shunt put in. It will be a venticuloatrial shunt. The cerebral spinal fluid will be shunted from the cerebral ventricles into the right atrium of his heart.
I got a little emotional tonight he seemed to be having some apnea episodes so they increased the support he was getting.
The physio came and did some manipulations on his lungs trying to get those secretions moving up into where it can be suctioned out.
Thanks so much for your love and support! Your messages honestly get me through the long days.
UPDATE #11
UPDATE
When I got here today he was awake and stayed awake for a good 40 mins which was a long time for him! Is he the Spencer I'm used to no but he did respond to my questions.
The neurosurgeon and his team came and talked to me this am. He felt the the cerebral spinal fluid needs to be dripping continuously as he feels it might perk him up. He would like him more alert so they have a better base line for surgery.
He said they would probably do the surgery Friday and would be most likely doing the VA shunt I had talked about in a previous update.
Of course a concern to doing the surgery is that once it's inside they have a harder time knowing if it's working properly. Leaving it externalized though increases his risk of an infection.
The intensivist talked to me today he and the neurosurgeon seemed to in a understated way say there was worries about damage that can't be seen. I have been worried about this too it makes my stomach ache thinking about it. He also is worried about him being able to get off the vent and how his scoliosis and kyphosis is impacting him.
They did try to sit him up on the edge of the bed. He wasn't able to hold his head up for very long and needed a lot of support but the physio said she was happy with what he did. They had wanted him in his wheelchair but that wasn't possible.
I'm praying that letting that csf drip constantly will help with his level of consciousness if it doesn't help I don't know what to think.
The constant roller coaster of emotions is so wearing in felt so great and optimistic with him this am and now my emotional state is back to last Friday morning when I got the phone call.
I just need a miracle!
UPDATE #12
UPDATE
Today was a day of ups and downs.
When I got to the hospital his nurse who he had yesterday said he noticed he was brighter and more alert. I noticed he was too. He got a wash up and his hair washed and perked up more. As his nurse said who doesn't love a spa day!
Later his physio person came in sat him up again and omg he was so much stronger she was very impressed. She also was able to move up secretions in his lungs.
After that he was still alert and when back in bed tried to keep his head straight. He's tended to try and lay it to the side. He also watched some tv he loves family feud.
I was really happy with all these good things!
I sat in during rounds with his team. Pluses were his blood and csf samples both came back clear.
His surgery will be tomorrow they said maybe today but most likely Friday.
They then talked about his apnea events he had a few episodes a a few nights ago and had one this a.m. while awake. Even though the MRI showed no damage their fear is there is some. The team leader said I have to be honest with you that he may need a trach if there is some damage to the areas of the brain that control breathing. That was upsetting to hear but it was a worry of mine. People with spina bifida have a condition called a chiari malformation where's the brain tissue is pulled down into the spinal canal. Their fear is it's pulled down more.
I have tried all day to tell myself and my boys and hubby one day at a time and he had lots of pluses today but gosh it's so hard at times.
This morning my phone was acting up again and dropped a call between Spencer and hubby. When I was finally able to get him back he was angry with me said I should go get a new phone ugh! Firstly I only leave the building to sleep and a new phone is the last thing on my mind. Secondly money will be tight and I'm fine with that I'd do anything give up anything for Spencer but I don't need added expense or his anger. So I wasn't going to get one and then later today it totally quit. So I ran out and got one freaking out the whole time hoping they wouldn't take him to surgery while I was at Costco. I was crying in the lineup and had a mini anxiety attack.
Then when I got back my oldest son called and as I was talking to him Spencer started nodding his head back and forth and up and down. At first I thought he was listening to us. Then I realized it as more serious. So I hung up and told nurse. He went to see Dr and I called back son and put him on speaker hoping he's settle Spencer. When I said can you wave to him Spencer started and wouldn't stop.it was so upsetting to watch! A Dr came in and I swear he looked like he was 15. Didn't really do much said he was responding in appropriate ways eyes were good etcetera. They did give him a med because they thought it was a reaction to med given earlier. He finally settled and was resting so I left to go get a charger I thought my old one would work but didn't fit.
As I was walking to car I run into mil. She starts asking questions and I am thinking why can't your son update you I just find it so wearing trying to keep everyone in the loop. So I say I gotta go get a charger when you go see him please don't stimulate him as he was anxious earlier and the nurse wants him calm. I go and come back to find her right beside him asking him a ton of questions and her thinking his involuntary nods she got going again were him answering her. Seriously what don't you get about no stimulation!
The nurse came in and asked what happened and I basically said he was stimulated. Mil says to me oh was I not supposed to talk to him ugh.
She left and he settled. He started doing it later when he woke himself with a vent issue. His older brother was there and just sitting with me. When he said GN to Spencer he started doing the nodding and waving and doing a thumbs up. His nurse and Dr felt it might be a seizure so they gave him a milligram of ativan and it helped thankfully! That was really tough to see!
I'm sorry I didn't update sooner I had some issues getting the tap talk all to work I really need to write down my passwords.
UPDATE #13
UPDATE
I got here a few hrs ago and they told me his surgery won't be until tomorrow ugh so frustrating!!
I did talk to the neurosurgeon and he feels he is getting more alert.
Although it won't be done today he felt that a bit extra rest maybe beneficial as well.
He unfortunately is still doing the head shaking and nodding but was able to purposely answer the medical teams questions.
I so appreciate all of you so much! I feel like I actually have people who listen hear. Thanks so much for your prayers for Spencer and our family!
UPDATE # 14
Just wanted to give a quick update before I go to sleep. Spencers surgery will be between 6 am and noon tomorrow barring anything delaying it!
Today was a pretty quiet day. He got moved from ICU pod A to pod B. This pod only has about 6 or 8 beds in it. It is quieter and is for more rehab type icu patients.
We let him rest a lot today only me and hubby were there. We spent
some time just chatting with him and showing him a bunch of photos that were of things he enjoys or family pics. He loved seeing them and kept pointing to himself when they were photos of himself.
He had an EEG today to make sure the head nodding and hand waving weren't a seizure. Thankfully they said it wasn't yay! He is still doing it but less often and not as strong.
We got to talk to the surgeon and he was able to answer my questions.
I'm really tired tonight I wanted to respond to some messages but I'm falling asleep as I type. I just wanted to say you are all such a blessing and please know I read each and every message through out the long days and the comfort and hope for Spencer I get from them is so awesome!
UPDATE #15
They just took him to the OR. That was really tough. Waiting and praying and can't wait until they bring him back to ICU!
Thank you for lifting him up in prayer today! Reading over them helps so much.
Praying that he has a successful surgery, that his doctor and team give him the best care and that Spencer's recovery goes smoothly!
UPDATE #16
UPDATE
He just got back from surgery about 30 mins ago and the doctor said it went very well! That was seriously the longest 90 minutes of my life!
Now it's just wait and see how he responds to the new shunt.
UPDATE #17
He had a pretty quiet day recuperating from his surgery.
Talked to the intensivust today and she said he is on the lowest setting for his ventilator and that they will be doing some tests on him to see if he will be able to get off the vent. She wants to give him a fighting chance at it as doing a tracheodomy is another procedure and something else to adjust to. Also he wouldn't be able to talk for quite awhile or eat solid food. They are hoping he's a bit stronger now and will have a better cough reflex. Also hoping he won't have as many secretions to make getting off the vent easier.
I want him to have a chance and just being off it but the apnea worries me and although they say they won't attempt it unless they are sure he's safe and can be successful I don't want to put him through anymore trauma of a 3rd intubation if it's not successful.
I wish I had a crystal ball!
She said we are probably looking at least another 3 weeks in here poor kid!
I am trying so hard to just take it one day at a time but gosh its hard not to think ahead and wonder about random things. I wonder about how independent he'll be compared to before. Can he still use his small chair or is he going to need a chair that is larger and with more support and then what about a vehicle to house it and get him in the car. Sometimes there is just too much time to think. I keep giving myself a mental slap and say stop it but I won't lie it's tough!
I wish hubby would quit calling us mommy and daddy when he refers to us when he talks to Spencer. I don't even know if he realizes he's doing it.
UPDATE #18
I had to go to my car and just cry i just feel so so overwhelmed and so angry and so sad. I'm tired of being strong.
Today along with the head nodding and shaking and hand waving Spencer has started staring off into the distance. He doesnt respond as quickly either. It's like I'm losing a little bit more of him every day.
I'm sitting here in my car and I keep asking why. Why him, why does his brain injury seem to be getting more obvious. Is there a lesson I just want to know why.
What is he thinking and feeling is he scared.
Could I have done something differently. Will we ever be happy again.
I just want my Spencer back please God.
UPDATE #19
Hi everyone I just wanted to thank you all for your prayers and support when I posted my last update. Yesterday I just felt extremely overwhelmed. Your messages made me feel like I wasn't alone and that I can do it. You all seem to know what I need and for that I'm eternally grateful!
Talked to Spencer's doctor today and she got a 2nd intensivist to look at him they both along with his respiratory therapist feel he needs a tracheodomy.
I'm so sad for Spencer he won't be able to speak right away. I miss his voice so so much. He will be able to mouth words.
I do want him off the vent but I really hoped we wouldn't have to go down this road. I just feel bad for him and wonder when the poor kid will get a damned break.
It's all the unknowns that overwhelm me and I need to be more patient but it is so tough.
He has lost a lot of his upper body strength and neck strength to hold his head up. We don't have a vehicle with a lift nor do we have one in his room because he's always been able to do his own transfers. He'll probably need a new chair too.
My oldest son and I talk several times a day I'm so grateful for him and the Peas! I'm alone for the majority of the time my husband only comes a few times a week and he doesn't really comfort or support me. It's not about me but I really wish he's at least ask how I am or even bring me a meal.
We had Spencer sit in a recliner type chair yesterday evening and they did it again today. I think he enjoyed it and was able to stay awake for about an hour and a half. I used a laminated alpha keyboard to get him to spell out some answers to questions. His oldest brother did a video call with him and asked him some questions in their chat. It brought tears to my eyes to see him try and communicate he did really well with it!
They said some of the things he's been doing head nodding hand gestures and the staring off into space could be what they call ICU delirium. It's rough to see him do that stuff.
The tracheodomy will take place tomorrow or Wednesday by the sounds of it.
My hope is that this will speed up his recuperation. I'm hoping to get more of the plan for Spencer in the next few days. He is the driver but I really need to know what support he and I are going to get. We live in a really tiny town don't even have a traffic light or hospital. Just really concerned about what the plan is to get him as mobile as possible and what assistance we will get.
Please know that I read each and every post and message! I read them often they really help get me through the long days and I know they are helping my sweet Spencer!
UPDATE #20
Today was a busy day for Spencer this morning when I got to the hospital and went into his room he wasn't very responsive and wouldn't answer my questions or answered them incorrectly. That always upsets me when he does that because I'm always wondering is it ICU delirium or is there something else going on. After I talked to the nurse about how his night went and how he was for her I then went and talked to him some more and then he seemed more responsive and was actually engaging with me so that made me feel better.
They've started sitting him up in kind of a lounge-type recliner and I think that's helped him with his recovery. During his rounds the doctor said that she thought that a lot of the things I've been seeing are because of ICU delirium. She said that she was going to do a bunch of blood work on him to make sure that the delirium wasn't caused due to an underlying infection.
I also talked to the doctor about my concerns about what the plan was for Spencer and how I'm not only a planner but a worrier she told me that once the trach is put in that they are going to try and get him to have more periods of sitting up, trying to get him into his wheelchair and even getting him outside because now he'll have more freedom with the trach.
She also went on to say that although his journey may be long she and the other intensivist felt that he could get back to his baseline before all of this happened. That made me feel really encouraged and hopeful for Spencer.
A She also talked about what will happen once he leaves ICU. He will go up to the neuro floor and from there he may even go to a rehab facility or a part of the hospital that just focuses on rehab. It will just depend on how well Spencer does in the next few weeks. Right now the focus will mainly be on getting him weaned off the vent getting him into a smaller tube for his trach and trying to combat the delirium that they feel he's experiencing.
After rounds were done they took him out of the lounge chair and had him sit up on the side of his bed he had to struggle to keep his head up but I kept on encouraging him and you could see he was really trying to keep his head up and straight. It will take a bit of work but I think he can get there! While he was sitting up the respiratory therapist worked on getting some of that phlegm out of his chest and him doing some deep breathing in and out he worked really hard trying to help the therapist. It was great to see him engaging and trying to help with his therapy.
This afternoon he had his trach put in the doctor said it went very well and that they were pleased! When I finally got into the room to see him he just looked so much more comfortable and it was so great to just see his face with without all that gear and the tube in his mouth. When I asked him if he was happier without the tube he nodded yes. He's not quite at mouthing words yet and he said his neck and throat is quite sore but I'm hoping in the next few days will be able to mouth words. I can't wait till he can tell me he loves me or even just says hi Mom!
It's such a small world while I was waiting in the family ICU waiting room another family was also waiting for their loved one to also get a trach done. Well I was sitting there I heard them mention a name that was rare and was also the name of a guy I went to High School with so I said to them did you just say such-and-such name and they said yes. I said I know someone who has that name. The man said is he from Drumheller? I said oh my God he is I went to school with him and actually worked with him at my job after school! he said he was really good friends with him how crazy is that!
I just want to thank everyone for all their prayers, love, and support for Spencer and for me and my family! I really really do appreciate it! I know I keep telling you this but your support makes all the difference!
I realized that on my new phone that I don't have to type everything I'm able to just speak into the mic and let it do the typing for me so hopefully I can respond to more of your questions and comments and messages.
UPDATE #21
Hi everyone! Sorry I didn't update you all sooner today Spencer had a really busy day again today and it was a good good day!
So yesterday as I told you all he had a trach put in. Last night they monitored him with his trach and felt that it was appropriate to try and take him off the vent today and he's been off the vent all day and doing very well! They will try to keep him off the vent and see how he does overnight. This is a big step for him and I'm just so happy and proud of him too! He's working so hard to try and get better! The respiratory therapist today took a look at his trach and cleaned it and said it was healing really well she was really pleased.
Today he also sat up on the bed they call it dangling because he has his legs dangling over the edge of the bed he still needs help of course sitting up. I and his physio team can see he is getting stronger and he is really trying when they tell him to sit up straighter and to try and hold his head up.
They did some respitory exercises on him as well and asked him to cough really hard. He was able to cough it out through his trach!
As the day progressed I could see little glimpses of my Spencer and it made me feel so good! Of course I told the nurse this and I said I know you don't know my Spencer before all this happened but I just know that he's in there and that he's fighting to be the way he was before this happened to him. The doctor came in and talked to me and said how pleased she was with his progress with the trach and when I told her about seeing little glimpses of him she said that's what I love to hear from the loved ones. She said we're going in the right direction!
Later in the day he was laying in his bed and he was moving his head back and forth and I said to him Spencer is something bothering you and he nodded his head and then he started kind of waving his hand in the air. He crooked his finger and I said do you want me to come over there and he nodded his head yes. I said are you trying to tell Mom something and he nodded yes. I said do you want to try and spell it out on your alphabet board and he said yes and then I said to him how about if I say out each letter of the alphabet and when I say the right letter of the word you are trying to spell you nod your head yes and we'll spell out the words. So he spelled out the word head and I said to him are you trying to say you have a headache and he shook his head no. I then said are you trying to say your head is itchy and he said no. So then he spelt of and I said you want the head of the bed moved and he said yes. It was just so great to sees him communicate! He also spelt out hi and I love you with his finger to his oldest brother when he face timed him.
I truly believe your prayers and support are making the difference for Spencer and for that I can never thank you all enough! God is watching over him and answering our prayers!
UPDATE #22
Spencer had another day of working hard to try and get back to where he was before this all happened to him. His team is making a great effort every day to get him sitting in his recliner chair and getting him sitting up on the edge of the bed. He's working on getting his lungs stronger and getting his upper body and trunk strength back in order to hold his torso up straight. They placed a full length mirror in front of him today to help him to see what he needs to work on. I can see the determination in his eyes as he works hard to be able to get back in his wheel chair.
His boss from the store he works in called today and he was so excited and happy to her from her and his co-workers.
He's able to stay awake and engaged more and more and for much longer periods of time!
This afternoon he was able to go and sit on the ICU terrace he hasn't been outside for 2 weeks he really enjoyed feeling the sun on his face!
He was off the vent overnight and did very well the Dr was very happy. She said they will continue to try and ween him to a smaller trach tube and hopefully being able to speak. She said he may need some speech therapy to help him get those muscles needed for speech stronger.
I've had some peas ask if they could send Spencer get well cards so I'm going to post my address if you would like to send a card
Spencer Lang
Box 322
Trochu, AB
T0M 2C0
Canada
Thanks again everyone for your continued support, love and prayers it really touches my heart And I know they are really helping Spencer!
Much love,
Kathy
I'm adding a photo of Spencer enjoying the sunlight today!
UPDATE #23
Update and a bit if a vent I guess. So I missed rounds so his nurse informed me he's being transferred from icu to the Neuro floor probably early next week. I'm really apprehensive of this a lot of mixed feelings. Part of me is excited for this step the other part of me is the worrying mom.
Worried about level of care for monitoring him, will respiratory and physio be doing all the things they do now sitting him up in a recovery chair and all the upper body stuff to get his trunk and head strength back as well as getting his lungs back to being healthy. I'm sure my worries are unjustified but as his mom I can't help but worry. He's doing better every day and I just want to keep him on that upward trend.
So then after I rationalized that all in my head and felt a bit better I get a call on my cell. It's some secretary for some neurosurgeon I've never heard of. Firstly English was not her language she was fluent in. Secondly she says he's wondering if Spencer is still in the hospital uh no shit he's in icu.
I said I'm confused I've never even heard of this Dr he doesn't even know if my son is still here but he's been internally referred to be his Dr after he gets out.
That will be a HELL NO I'm thinking.
Also why would they think I would just be ok with this stupid idea!
I said I don't understand you and you are upsetting me and I hung up.
I told the nurse and she was confused as me. I said to her given the shit he's been thru I am not about to bring some new dr up to speed. Also I said I found out after the fact that the Dr who introduced himself to me as the Dr who would preform his trach actually only over saw a resident who did it. I think I should have been informed of that before hand. His intensivist even said it would be the trauma surgeon doing it. Had I known that I would have declined and said I only want the trauma surgeon doing that procedure. I get it's a teaching hospital but they can learn on someone else if you kwim.
Okay now something that's not vent sounding.
Spencer did his physio and oh my gosh he has improved so much. The physio person said the improvement between today and Wednesday (the first day she became part of his physio team) is fantastic! She saw a ton of improvement. Im so damned proud of him! Yay Spencer!
He's having a well deserved rest now and this afternoon he is going outside again and his boss is going to stop in and see him.
Again thank you all so much for your well wishes, prayers and support I don't have the appropriate words to tell you all how much they mean! You are all rockstars!
UPDATE #24
Sorry I didn't post yesterday. The day was kind of busy and when I finally went to bed I realized I didn't post an update.
Spencer was having a bit of an off day mood wise. Was quite despondent. If i were him gosh I'd have ton of crappy days.
They gave him a shower yesterday and they said he seemed to enjoy it. I'm sure it felt wonderful to have his hair properly washed! They have some sort of stretcher type apparatus that they can lay him in as he has his shower.
His dad and brother came to spend the day. Of course he brightened up a bit for dad. I think he is thinking mom is here everyday dad is just here sometimes lol.
We went outside for an hour or so he enjoyed that.
Dad stayed with him while my son and I went to a restaurant to eat. That was a nice switch from the hospital food I've been living on for 95% of the time. It was also great to spend time with just him. I worry he gets lost in the shuffle since dad is so busy at work and older brothers don't live near us. He really liked it and gave me a huge hug and said how much he liked doing that. He is really close to Spencer and very much a momma's boy! This has been tough on him.
I keep missing rounds since the new intensivist started I swear he does them at 7 am! So every Friday a new one starts for the week. Spencer's one last week was awesome not only did she talk with you during rounds but she also touched base after that to give results she may not have had during rounds.
This new Dr who btw was the trauma surgeon who said he was doing his trach but didn't hasn't talked to me once. In fact I haven't seen him once on the ICU pod since his week started on Friday.
I noticed yesterday one of the patients in his pod has been moved. My husband said oh yeah she wasn't here last time I visited. She was wheeling herself all over the unit. They haven't filled her room. I wish I knew why Spencer has to leave as it seems there isn't a need for the beds in this pod. They only have a max of 6 to 8 patients and there are 4 including him right now. He was definitely a patient with higher rehab needs then the person who left. I find it confusing and frustrating some days!
My MIL has been mia not surprising she never has been a hands on GM. She annoys the crap out of me but I know that Spencer is probably wondering why she quit coming to see him. Before this even though she was a hit and miss GM he would text her every day to see how she was and chat with her. Between her and my mia friends it's been an eye opener.
I'm so thankful for my boys doing all they do to cheer him on. My husband can't be here much but he is one of his biggest cheerleaders in his corner.
And lastly I'm so grateful for all of you! I feel bad when sometimes I can only give your posts a like but please know that behind that like is a ton of love and deep appreciation!
Spencer was more like himself this morning when I got here yay! His older brother is coming to see him sometime today he will enjoy that!
Right now physio is working with him. Unfortunately on the weekend they don't dangle him on the side of the bed and work on his trunk and neck strength. They work on that stuff but not as intensively. He works so hard at trying to cough and sit up without support and to hold his head up!
UPDATE #25
So the day started crappy because he had the same shitty nurse. Like I said earlier he was not showered or sitting in the chair and his face was dripping in sweat.
I could tell something was bothering him for the past few days. To me he looked like he was in pain and yesterday he said his mouth was sore. Today same thing looked like he was in pain so I asked him to spell out on his alphabet board where the pain was and he said his jaw was sore. So then to make sure that it was his jaw I touched his face and his cheek and jaw area on one side and then the other and he said it was his right side. I told his nurse and she said that she'd put a call in to the intensivist so when he showed up I was telling him what Spencer had told me so he then examined him. When he touched a certain area of his jaw Spencer just about jumped out of his chair he he was in so much pain. His doctor said wow good catch mom and he thinks it's a duct that sometimes got infected he's on antibiotics now and they also did an ultrasound on his jaw and tomorrow I should hear the results of that. His nurse finally got him showered and in his chair and he did go outside for a little bit it was really hot out so we didn't stay out too terribly long. When physio came in to do their work with him getting him to sit up, helping him get the secretions out of his lungs, working on his posture I said to her last week there were two of you doing his Physio and you were dangling him over the side of the bed. I think that works a lot better than sitting in that recliner chair. I then went on to say they did that on the weekend and it just seemed like he didn't try as hard and he wasn't able to cough as well.
Of course she said oh no this works just as well as dangling on the side of the bed. I said well as an observer and I know I'm not trained like you are I just could tell that it wasn't as successful. So she went and did her physio with him sitting in that chair and when it was all said and done she said to me you were right he doesn't work as hard this way and he doesn't get up nearly the secretions as he does when he's sitting on the side of the bed.
I just found today so frustrating because it just seemed like no one would listen to me and valued what I was saying.
Then later in the day Spencer was kind of half sleeping and I was just rubbing his arm and he kind of woke up and startled a little bit. He then settled and then all the sudden started looking like he was in pain again his heart rate went up his oxygen level went down and he just got this panicked look in his eyes. His eyes got big as saucers and he kept grabbing at the side rail beside his head like he was panicking so I called his nurse in the same crappy one and asked her tocome and look at him. She comes in and he's still in the middle of that episode and she says so do you want to be repositioned!
Seriously that was not what his problem was and I said he's in pain or something is startling him. I said he did that the other night in the middle of the night and the nurse wondered if you had bad dream but obviously hes awake now so it's not a dream.
Yesterday he wrote the word drink for me and thirsty for his brother! It took a bit of work for him and some figuring on the word thirsty lol.
I think Spencer is suffering from a bit of depression he seems down the past few days except when someone visits or maybe he's just sick of looking at me for 10 or 12 hrs lol.
The respiratory therapist said that possibly Thursday they will put in a smaller tube for his trach and remove the cuff. Doing this will enable him to talk and eat soft foods I'm so happy and excited for him!
I'm hoping his routine will be more solid the rest of this week and they will go back to the more intense therapy.
It sounds like it might be a bit of a wait for going to the rehab unit apparently there is a bed shortage there and a few people ahead of him. So he could be in ICU for a while yet.
UPDATE #26
Spencer was in better spirits today when I got there!
Thankfully he had a different nurse. I've been so thankful for all the fantastic medical staff he's had looking after him.
They took my advice and had him do his physio and respiratory therapy while sitting on the side of the bed. He worked so hard I had tears in my eyes as he tried raising his arm over his head as he balanced himself on his other arm/elbow. He never once hesitated when he was told to try something.
His jaw and cheek area are still so sore. He looks like he is in so much pain it's hard to watch. They have decided to give a stronger pain med as the Tylenol isn't working.
Tonight his dad came for a bit and brought a laptop to see if he could communicate with it.
This is why I said Spencer is literally the kindest and nicest person I have ever known. So his pain was bad and the nurse had given him the stronger pain med and dad had to leave but Spencer wanted to try laptop even though he was in so much pain.
We said type what ever you feel like or can.
This is what he wrote:
Hi how are you?
OMG the poor kid has been thru a ton of stuff and is in pain and he's asking about us. I could have bawled. I said to him my gosh you amaze me Spencer!
I am in awe of him and his fight and determination and his unending love and concern he has for us even though he is having such a rough go!
On Thursday they are planning to put a smaller tube in his trach and with this he will be able to talk for short periods I'm excited for him and so looking forward to hearing his voice again, I've missed it so much!
Thank you for all your support, prayers and love you are all so amazing!
UPDATE #27
Yesterday Spencer was still in tremendous pain they bumped up the amount of narcotics they are giving him and that helped thru the night.
He had a pretty good day yesterday despite that and worked really hard in physio.
The last 2 days he has had a few nurses help with his care or saw him on his way to the terrace and they all thought he was looking much better and brighter, that made me happy! As his mom you sometimes wonder if you are just hoping you see improvement.
He just had a ct scan this morning just to make sure the shunt is not a source of the pain or infection. Haven't heard the result yet. The side of the face which is sore is definitely a bit warmer to the touch. One of the nurses who has had him as a patient and is the cover nurse today wonders if it's a tooth or even some wisdom teeth coming in. I've been thinking the same thing ugh.
Right now they are changing out that trach tube to a smaller one. They booted me out of the room. I hate not being there when they do stuff to him.
ETA The procedure went very well. There hope is as they wean him to this he will be able to have the trach removed completely. They will finger cap it to see how his breathing is and if it is good they will try working it for a short period to see if he can talk.
After this he has physio. So a busy day so far for him!
ETA
He did amazing at physio he not only worked really hard at sitting up and getting up from a prone position but he was able to cough so hard he coughed the secretions right out the trach tube and didn't have to be suctioned down the trach!
He is getting excited to see his brother this weekend. I'm hoping that my 2nd oldest can come visit at the same time as oldest and dad and youngest. I think having his whole family here would really brighten Spencer's spirits!
While I was in my room last night I was watching coverage of Hurricane Harvey and the utter devastation it has left.
They told the story of an expectant mom who had a scheduled C section during its wake and showed their home and vehicle which was destroyed. They had other children and now a precious newborn.
Another story was of a premature baby that had to be airlifted to another hospital and the parents couldn't go with her. They later were reunited with their baby.
As I heard their stories I was reminded of the hope and good that comes out of devastating situatuons.
This experience with Spencer has been devastating in so many ways but the hope and strength I get from him and all of you comforts me and gives me strength!
UPDATE #28
UPDATE
Having some set backs! I just wish Spencer could get a break!
Yesterday his pain in his cheek and jaw got really bad he described it as a 12 out of 10. It got so bad he tried hitting his head.
They don't think it's dental they gave him a ct yesterday or the day before, sorry the days seem to run together here. They said it's just as telling as a dental xray so they don't feel it's a bad tooth or wisdom teeth. Plus they did an oral exam.
They are now thinking it's a nerve pain. They tried a dose of a nerve medication yesterday it will take a good 24 hrs to see if it works. We may have to go thru a few different ones to figure it out as nerve pain is hard to treat and diagnose.
His pain is the same today. They had to increase his pain meds substantially to keep the pain under control.
ETA
Just finished talking to the Dr and he thinks it's Trigeminal Neuralgia (5th nerve). The cause in his case is unknown but the pain can be debilitating and chronic.
They added another painkiller to his regiment but it didnt touch the pain They will stick to the one They started him with and are increasing the dosage. They are going to try and get him to a point where he isn't writhing in pain.
The nerve drug they put him on last night could take as long as a week to start seeing some results. His nurse today has been really great and told me her husband suffers with it and that it may take a bit to find a nerve pain med that will work.
They would like to try another med but they said he has an elevated liver enzyme. The Dr and his nurse were confused as to why a liver enzyme was checked they don't know if it was checked off by accident on his lab requests or if there was a reason for the test.
The bad thing about the narcotics is he gets very drowsy and it makes it a bit challenging for Neuro exams.
A few days ago they changed his trach to a smaller one this is a step in the right direction. They also took out the cuff/balloon. He adjusted very well to it.
His level of secretions and amount of suctions increased but he is able to cough them up and out his trach most of the time. Which is great that means his cough is getting stronger!
The secretions are not as thick now but there's more of them. They think he is having more oral secretions which is making him have more trach secretions so they put him on a patch to try and reduce those.
Today though he started coughing huge amounts of brown secretions. They were almost running out of his trach. They are going to put the cuff back in and change him to a wider trach.
He has a mask that sits just over his trach site pumping moist 02 this is to keep his secreetions loose, it was at 28% they've bumped it up to 40%.
On of the reasons for the brown increased secretions is that he might have aspirated from his feed tube is that is one possibility.
ETA
Since changing out the trach and putting the cuff back his secretions seem to be better.
I see him making progress but now this debilitating pain is so hard to watch him struggle with!
Matthew came last night on the plane and has been trying to keep Spencer entertained and his mind off his pain. He wrote out a list of motivational quotes and has been reading them to him. His dad and youngest brother just left.
Matthew being here has been great he and Cooper are so great with him. Sadly my 2nd oldest couldn't make it today.
Apparently my husband's truck has been acting up again and almost quit on his way here. He had had issues with it for a long time. He told me he was going to sell it when he gets home and then use my car and we'd get a new vehicle ugh. He said while you're sitting there you can look for cars online. Uh that would be a NO!
First of all I can barely focus on Spencer some days when we have days like today so me looking for a car while here is not going to happen. I help with Spencer's care etc I don't have the time or energy to put into researching vehicles.
Secondly we don't know yet what kind of vehicle we may need for Spencer and honestly we can not afford a vehicle right now. The hotel and food and gas costs are adding up and please don't interpret that as complaining I will absorb any financial strain to be here for Spencer! But stress wise I can't deal with another financial strain as well but he is stubborn and doesn't get it. He doesn't even ask how I'm paying the hotel bill.
As Spencer's nurse said today has just been a shitty day!
ETA
I forgot to add on Thursday they were going to transfer him to the rehab Neuro unit but because of his unmanageable pain and increased suctions/secretions he can't be transferred out of ICU.
UPDATE #29
So yesterday Spencer really struggled with pain but still managed to have a good visit with his brother.
They figure the brown increased secretions were from his feed tube the feed was going in his lungs instead of his esophagus so he's got pneumonia.
Because they were able to get his secretions down they moved him up to the Neuro rehab floor late yesterday afternoon yay!
I was so nervous but thankful and when Matthew and I left late last night we both said gosh he is doing better we just need to get this Trigeminal Neuralgia under control.
This morning I had to take Matthew to the airport at 6 am so when I got back to the hotel I went and slept some more and got to the hospital later then usual.
As I was walking down the hall towards the main entrance and elevators I heard them call a code 66 unit 112 and for some reason I knew it was him. This code is called when a patient is in extreme distress.
When I got to his floor it was him!
They think he had a seizure. His respiratory rate also went down.
His pain was not being managed overnight and this morning with the narcotics they were giving him so they tried morphine this am they don't feel it was that but he developed a blank stare and wasn't responding they gave ativan I think and said he came back but several minutes later did the blank stare did another round of ativan and came around was interacting but happened again and his respitory rate went down so they called the code.
They took him for a ct and they see a pocket of fluid beside his shunt. They are going to do a tap and see if it's infected. They are also going to do a 24 hr EEG to see if he's having continuous seizures.
He was moved back to ICU but not the one for stable patients.
I'm so scared for him and I just need him to get better. I hate that Spencer is facing trial after trial! I want to take away all his pain and stress.
My husband isn't coming he has a cold and said he doesn't went to give it to him.
I hate this rollercoaster and now having to be back in the ICU and the doom and gloom that this pod has compared to the stable ICU pod and unit 112.
Spencer needs some good news God!
They are doing the tap right now so I'm in the family room waiting.
UPDATE # 30
Yesterday was a rough one for Spencer and me.
I stayed at the hospital until 330 a.m. He was having some delirium episodes last night. He would point to things in the room or try to swat at things. Between the seizure and the amount of strong narcotics and anticonvulsants the delirium was unavoidable. They have cut back on the narcotics today because of the delirium and because his LOC is not where it was before this last set back.
He had bad delirium today with me this afternoon he got panicky and his eyes got huge and he didn't know where he was or who I was. Sucked to see him like that it broke my heart.
Tomorrow I'm hoping we can get in the recliner chair maybe outside and get him interacting more so we can stop that delirium!
They ended up only doing the EEG for an hour and didn't see any seizure activity. That was good to hear but they don't really have an answer for why he had one.
He did end up getting pneumonia from his feed backing up. That just pisses me off.
His cough is weaker now I think until all those drugs are out of his system.
From the ct they did yesterday they saw a pocket of fluid between his brain and shunt. They did a tap on it to check for any infection or bugs. So far it looks good. His pupils are 2 different sizes since what went down yesterday. They gotten closer to being symmetric but there is still a difference.
It's looking like he's developed thrush too ugh.
His pain from his Trigeminal Neuralgia was pretty good most of the day but around 8 tonight he had some tremendous pain. Although they've cut the dosage from 2 mg to .5 mg he still got extremely drowsy from the smaller dose.
They are giving him 2 really strong antibiotics for the 2 pneumonia bugs he has, yes 2!! This will also cover any bug from the tap they did. He is still in isolation for the MRSA bug he has.
Late this afternoon they moved him from c pod to b pod ICU which is where he was for awhile. It's for more stable patients so that's a plus. The c pod was very intense and depressing and stressful so I'm glad hes out of the that icu pod!
He could be in b pod for awhile because same as before it's hard to get a bed on the Neuro rehab unit and he can't share a room because of the MRSA.
Although this may just be a spped bump in some ways I feel in some ways we are back at square one.
I'm so frustrated for him and sad too.
When he got to unit 112 on Sunday evening he looked happy and when his pain wasn't bad he was engaging and not the drowsy kid from those first days and now we're back to those days.
I'm back to having extreme knots when I leave him and that utter exhaustion.
I'm hoping and praying Spencer has some great days ahead of him and that we can get him back to where he needs to be and where he was before this setback!
My son went to emerg with symptoms of a blocked shunt. He literally was fine and going to work and became ill. He was ambulanced to a bigger center and admitted.
Left him last night seemed a bit better and told him I'd see him this a.m. We live about 2 hrs away from hospital he's in.
Got a call this morning that he was found being non responsive and had a blown pupil.
They had to intubate him. He's not woke up yet. Had to externalize his shunt. Took him to ICU.
I'm praying like i never have before. Waiting for some more tests. Listened in on rounds where they are discussing the plan for him. It's so much to take in and so scary how fast things went south.
Sitting here beside him just praying and hoping that my guy gets better!!
I believe in the power of the prayers, thank you peas!
UPDATE **
Thank you everyone!
They had to get him ready for a CT scan for neuro and then a imaging test on his belly to see where the block is and if there's a cyst again. They had to insert some contrast in his belly. So I'm in waiting area for family for the next hr or so well the tests are done and then when they get him settled back in his room.
Your messages mean so much!
Spencer is 22 and he had a shunt revision done at end of June. He's had a lifetime of medical concerns and procedures and he is a tough little guy.
It is very scary and I think I'm in shock. I go between crying my eyes out and then sitting there in a daze.
They are worried about pneumonia because he asperated.
They had to give him a sedative for all the tests coming up because he has to be still for them. So this will slow down him waking it's so frustrating I just need him to open his eyes.
His nurse said he will have the breathing tube until at least tomorrow at the earliest.
They didn't want to worry me but they said at some point they may have to investigate for any permanent damage to neuro function because they don't know for sure how long he was unresponsive for.
I'm only updating you all because otherwise I'd be in the corner of the icu waiting room in a fetal position.
Thank you everyone it means so much to me that you care for my son and are lifting him up. It brings tears to my eyes and warms my heart with every message!!
I will update you again later hopefully with some good news.
UPDATE 2**
I'm overwhelmed by all your kind words, messages, thoughts and prayers for Spencer and all of us!
2 of his brothers and dad came tonight to see him. It was hard to see my boys so upset but I'm glad they came. It was really hard calling my oldest he lives 12 hrs away and had just been down last weekend and came and had a visit with us. He feels so lost being so far away.
The CT scan they did today showed his ventricles are smaller which is good.
They turned down the vent from 60% to 40% his blood gasses look good so far.
Everyone has left so it's just me and him. He seemed to be responding when everyone was here. I told him if he wanted to know what happened on Big Brother last night he had to wake up, he's a huge fan. His hand moved so I'm taking it as a good sign. I'll probably stay another half hr and head home.
Thank you again all so much, your support is really helping me to face this I've been reading your messages all day and they are like a huge hug for us, love to you all!
UPDATE 3**
They just took Spencer for a MRI because he still hasn't woke up. They are looking at his brain to see if there is a reason for it.
I am so scared in talking to the Dr's they don't seem very optimistic
I'm praying and hoping like I never have for something positive
UPDATE #4
Just an update.
I talked to the neurosurgeon and another doctor on his team and although they don't have the official report they don't see anything on the MRI. They did the MRI to see there is something with his brain that is preventing him from waking up so that is good!
Now they are going to increase the amount of cerebral spinal fluid they are draining because they are thinking that although they initially drained a lot they think maybe they need to increase the amount. So they just took off 30 cc to start and will increase it from the 10 it was at to 15 per time period.
They are going to start him on antibiotics because they see his heart rate increasing and he seems clammy. They are concerned about pneumonia.
They decreased his vent from 40% to 30% O2.
He did try to lift his head a few times while I talk to him.
I am reading all your prayers and messages to him!
Thank you so so very much for your support!! You have no idea how much your words have comforted me and brought me some peace during this ordeal!!
Praying and hoping the next time I update you it's to tell you he's awake and off the ventilator!
UPDATE #5
Since they drained more fluid he opened his eyes 3 times while his dad was here about 4 or 5 hours ago.
A few minutes ago I was talking to him and caressing his head and he opened his eyes over and over again when I said stay awake open your eyes. i feel it's encouraging but the nurse seems to give the impression it was nothing.
My emotions are all over the place I just want someone to say yes it's definitely working he's waking up.
I felt so excited and now I feel so disheartened. I just need a miracle.
UPDATE #6
UPDATE!
When I got to hospital the nurse told me not only is Spencer opening his eyes more but is able to give thumbs up and squeezed her hand when asked. I seriously wanted to hug her!!
He has continued to do this for me and seemed to understand his brothers voice when he called from where he lives which is 12 hrs away.
He also tried to stay awake while his dad and youngest brother came as well as his uncle and family.
When I talk to him I keep reminding him where he is and that he's ok he just needs to try and stay awake longer and not to worry about why he can't talk yet. His brother was holding his hand while I was telling him this and he said that he squeezed his hand several times while I told him. I can't even imagine how scared he is waking up and not knowing how you got where you're at.
He has squeezed my hand numerous times and when asked to squeeze it harder can really grip my hand.
I'm playing some of his favorite music for him and they have tried sitting him up more too.
They have adjusted his vent even more he is doing most of the work.
They won't remove the tube until he is more awake I'm thinking it will be a few days.
He has a long way to go there is no doubt! We are making baby steps but we are going in the right direction!
Please continue to lift him in prayer he has a battle ahead of him and a surgery he will still have to face but he's strong and I believe in the power of the Peas!
Thank you for all your support and love you all astound me with your concern!
I'll keep you all updated!
UPDATE #7
Spencer is sleeping now I'm just sitting feeling more hopeful as the day progressed.
He had several visitors his dad and youngest brother came for a few hrs. His grandma came for a long visit and his uncle who lives not too far away came this morning.
Spencer really seemed to respond to his uncle it was great to see!
His uncle came back tonight. He is a calgary city police officer and came in his uniform and again he really responded to him. He told him he'd take him for a Peter's Burger and for a ride in his squad car and asked if he'd like that and he nodded yes. Just so great to see him more alert! He perked up later this evening when I put the tv remote/speaker by his ear while Big brother was on.
Tonight the respiratory therapist on the night shift was so happy and excited when she heard he was more alert! She was his RT that 1st day. She stayed and chatted for several minutes and told me her sister at one time owned a resturant in the town just down the road from our town. She then said I gotta tell you Spencer is just the cutest patient I've ever had. She jokingly said if she was 20 years younger and we had a laugh. She said I just feel he has a great spirit. I then went on to tell her some things about him. She then said she'd be off for the next 4 days and said if he got moved before she came back she wanted to go chat with him because she just needed to hear his voice. I then showed her a photo of him and she said you can totally see he is a awesome kid!
All the nurses/RT/doctors have been so great!
Thank you for all your messages/shared experiences and prayers and encouraging posts I read them over and over throughout the day, they give me strength and help me face this feeling more powerful!
I wish I could respond to each and everyone of them!!
I'm going to add a photo of Spencer so you can add a face to the young man who has my heart.
UPDATE #8
Today is the 1 step forward 2 back day.
After I left last night I was so tired got a hotel room for a while now that drive is just too long and i do too much thinking while on that drive.
When I got there they said I now have to gown and glove up because his sputum tested positive for the MRSA bug. This is more precautionary then anything.
They then said they wanted to try removing the breathing tube that was exciting to hear!
Unfortunately he wasn't able to sustain good breathing when it was removed. He's too weak to cough out all the secretions. So they intubate him again.
They used a larger tube when he was found unresponsive and in hindsight should have used a smaller one because he is so small for his age. Time was of the essence though. They don't feel his chords are swollen it's just the not being able to cough up that crap. So they now have used a smaller tube.
Unfortunately they had to give a bit of sedative and it really wore him out to go through that so his periods of awake time seem fewer between.
We did do a video call with his brother in BC today that perked him up. After I'm done getting a quick bite at cafeteria we're going to do a video call with our dogs he really misses them!
He is more responsive as far as nodding etc but I had to use my mom voice today to get him to try and turn and lift his head.
It will be at least another 48 hrs before they will even think about removing breathing tube.
I just want to tell you all how much your concern and prayers and support means to me!
When situations like this happen you really find out who your support will be and I have been so disappointed by a few friends.
So when I need support or am feeling down I swipe my tap talk app and find all I need from you fabulous peas!!
UPDATE #9
The cover nurse just came in to do a few things while his assigned nurse is on break. The cover nurse said I have to tell you how honored I am to work with your son the past 2 evenings. She said she helped his nurse last night reposition him and as she held him she felt a light and aurora from him. She is a Buddhist and practices meditation and that she just feels like he is a pure spirit. She said she can feel his aurora in the room.
Even so ill this kid amazes and humbles me!!
UPDATE #10
UPDATE
Today was a less stressful day for Spencer. Yesterday was a hard for him going through another intubation.
Today during the rounds I asked a few questions. One was are we pushing too hard with him. He is alert when responses are needed and makes appropriate ones. Yes his stretches of staying awake aren't as long as they should be but his little body has gone through a lot. They said that they are happy with his progress no it isn't as fast as they would like but it's steady. They said they will always listen to a parent/family member as they know the patient best.
I think it is slow and steady for him.
Today he responded more with head nods and shakes. He responded to his uncles visit and was happy to see his dad and later with his call goodnight he was really trying to respond.
The intensivist who is a Dr with 12 yrs of training yes 12 yrs said that he is pushing the neurosurgeon to operate soon to replace his shunt because the longer we wait they worry about infection. He told he he would circumvent the normal channels and let them know his feelings on the surgery being done sooner. Later that day he told me the neurosurgeon would be there to talk to me tomorrow. I don't really care for this neurosurgeon his bedside manner wasn't great when he operated on Spencer 3 yrs ago. I will be telling him that I expect better communication this time.
This time he will have a different type of shunt put in. It will be a venticuloatrial shunt. The cerebral spinal fluid will be shunted from the cerebral ventricles into the right atrium of his heart.
I got a little emotional tonight he seemed to be having some apnea episodes so they increased the support he was getting.
The physio came and did some manipulations on his lungs trying to get those secretions moving up into where it can be suctioned out.
Thanks so much for your love and support! Your messages honestly get me through the long days.
UPDATE #11
UPDATE
When I got here today he was awake and stayed awake for a good 40 mins which was a long time for him! Is he the Spencer I'm used to no but he did respond to my questions.
The neurosurgeon and his team came and talked to me this am. He felt the the cerebral spinal fluid needs to be dripping continuously as he feels it might perk him up. He would like him more alert so they have a better base line for surgery.
He said they would probably do the surgery Friday and would be most likely doing the VA shunt I had talked about in a previous update.
Of course a concern to doing the surgery is that once it's inside they have a harder time knowing if it's working properly. Leaving it externalized though increases his risk of an infection.
The intensivist talked to me today he and the neurosurgeon seemed to in a understated way say there was worries about damage that can't be seen. I have been worried about this too it makes my stomach ache thinking about it. He also is worried about him being able to get off the vent and how his scoliosis and kyphosis is impacting him.
They did try to sit him up on the edge of the bed. He wasn't able to hold his head up for very long and needed a lot of support but the physio said she was happy with what he did. They had wanted him in his wheelchair but that wasn't possible.
I'm praying that letting that csf drip constantly will help with his level of consciousness if it doesn't help I don't know what to think.
The constant roller coaster of emotions is so wearing in felt so great and optimistic with him this am and now my emotional state is back to last Friday morning when I got the phone call.
I just need a miracle!
UPDATE #12
UPDATE
Today was a day of ups and downs.
When I got to the hospital his nurse who he had yesterday said he noticed he was brighter and more alert. I noticed he was too. He got a wash up and his hair washed and perked up more. As his nurse said who doesn't love a spa day!
Later his physio person came in sat him up again and omg he was so much stronger she was very impressed. She also was able to move up secretions in his lungs.
After that he was still alert and when back in bed tried to keep his head straight. He's tended to try and lay it to the side. He also watched some tv he loves family feud.
I was really happy with all these good things!
I sat in during rounds with his team. Pluses were his blood and csf samples both came back clear.
His surgery will be tomorrow they said maybe today but most likely Friday.
They then talked about his apnea events he had a few episodes a a few nights ago and had one this a.m. while awake. Even though the MRI showed no damage their fear is there is some. The team leader said I have to be honest with you that he may need a trach if there is some damage to the areas of the brain that control breathing. That was upsetting to hear but it was a worry of mine. People with spina bifida have a condition called a chiari malformation where's the brain tissue is pulled down into the spinal canal. Their fear is it's pulled down more.
I have tried all day to tell myself and my boys and hubby one day at a time and he had lots of pluses today but gosh it's so hard at times.
This morning my phone was acting up again and dropped a call between Spencer and hubby. When I was finally able to get him back he was angry with me said I should go get a new phone ugh! Firstly I only leave the building to sleep and a new phone is the last thing on my mind. Secondly money will be tight and I'm fine with that I'd do anything give up anything for Spencer but I don't need added expense or his anger. So I wasn't going to get one and then later today it totally quit. So I ran out and got one freaking out the whole time hoping they wouldn't take him to surgery while I was at Costco. I was crying in the lineup and had a mini anxiety attack.
Then when I got back my oldest son called and as I was talking to him Spencer started nodding his head back and forth and up and down. At first I thought he was listening to us. Then I realized it as more serious. So I hung up and told nurse. He went to see Dr and I called back son and put him on speaker hoping he's settle Spencer. When I said can you wave to him Spencer started and wouldn't stop.it was so upsetting to watch! A Dr came in and I swear he looked like he was 15. Didn't really do much said he was responding in appropriate ways eyes were good etcetera. They did give him a med because they thought it was a reaction to med given earlier. He finally settled and was resting so I left to go get a charger I thought my old one would work but didn't fit.
As I was walking to car I run into mil. She starts asking questions and I am thinking why can't your son update you I just find it so wearing trying to keep everyone in the loop. So I say I gotta go get a charger when you go see him please don't stimulate him as he was anxious earlier and the nurse wants him calm. I go and come back to find her right beside him asking him a ton of questions and her thinking his involuntary nods she got going again were him answering her. Seriously what don't you get about no stimulation!
The nurse came in and asked what happened and I basically said he was stimulated. Mil says to me oh was I not supposed to talk to him ugh.
She left and he settled. He started doing it later when he woke himself with a vent issue. His older brother was there and just sitting with me. When he said GN to Spencer he started doing the nodding and waving and doing a thumbs up. His nurse and Dr felt it might be a seizure so they gave him a milligram of ativan and it helped thankfully! That was really tough to see!
I'm sorry I didn't update sooner I had some issues getting the tap talk all to work I really need to write down my passwords.
UPDATE #13
UPDATE
I got here a few hrs ago and they told me his surgery won't be until tomorrow ugh so frustrating!!
I did talk to the neurosurgeon and he feels he is getting more alert.
Although it won't be done today he felt that a bit extra rest maybe beneficial as well.
He unfortunately is still doing the head shaking and nodding but was able to purposely answer the medical teams questions.
I so appreciate all of you so much! I feel like I actually have people who listen hear. Thanks so much for your prayers for Spencer and our family!
UPDATE # 14
Just wanted to give a quick update before I go to sleep. Spencers surgery will be between 6 am and noon tomorrow barring anything delaying it!
Today was a pretty quiet day. He got moved from ICU pod A to pod B. This pod only has about 6 or 8 beds in it. It is quieter and is for more rehab type icu patients.
We let him rest a lot today only me and hubby were there. We spent
some time just chatting with him and showing him a bunch of photos that were of things he enjoys or family pics. He loved seeing them and kept pointing to himself when they were photos of himself.
He had an EEG today to make sure the head nodding and hand waving weren't a seizure. Thankfully they said it wasn't yay! He is still doing it but less often and not as strong.
We got to talk to the surgeon and he was able to answer my questions.
I'm really tired tonight I wanted to respond to some messages but I'm falling asleep as I type. I just wanted to say you are all such a blessing and please know I read each and every message through out the long days and the comfort and hope for Spencer I get from them is so awesome!
UPDATE #15
They just took him to the OR. That was really tough. Waiting and praying and can't wait until they bring him back to ICU!
Thank you for lifting him up in prayer today! Reading over them helps so much.
Praying that he has a successful surgery, that his doctor and team give him the best care and that Spencer's recovery goes smoothly!
UPDATE #16
UPDATE
He just got back from surgery about 30 mins ago and the doctor said it went very well! That was seriously the longest 90 minutes of my life!
Now it's just wait and see how he responds to the new shunt.
UPDATE #17
He had a pretty quiet day recuperating from his surgery.
Talked to the intensivust today and she said he is on the lowest setting for his ventilator and that they will be doing some tests on him to see if he will be able to get off the vent. She wants to give him a fighting chance at it as doing a tracheodomy is another procedure and something else to adjust to. Also he wouldn't be able to talk for quite awhile or eat solid food. They are hoping he's a bit stronger now and will have a better cough reflex. Also hoping he won't have as many secretions to make getting off the vent easier.
I want him to have a chance and just being off it but the apnea worries me and although they say they won't attempt it unless they are sure he's safe and can be successful I don't want to put him through anymore trauma of a 3rd intubation if it's not successful.
I wish I had a crystal ball!
She said we are probably looking at least another 3 weeks in here poor kid!
I am trying so hard to just take it one day at a time but gosh its hard not to think ahead and wonder about random things. I wonder about how independent he'll be compared to before. Can he still use his small chair or is he going to need a chair that is larger and with more support and then what about a vehicle to house it and get him in the car. Sometimes there is just too much time to think. I keep giving myself a mental slap and say stop it but I won't lie it's tough!
I wish hubby would quit calling us mommy and daddy when he refers to us when he talks to Spencer. I don't even know if he realizes he's doing it.
UPDATE #18
I had to go to my car and just cry i just feel so so overwhelmed and so angry and so sad. I'm tired of being strong.
Today along with the head nodding and shaking and hand waving Spencer has started staring off into the distance. He doesnt respond as quickly either. It's like I'm losing a little bit more of him every day.
I'm sitting here in my car and I keep asking why. Why him, why does his brain injury seem to be getting more obvious. Is there a lesson I just want to know why.
What is he thinking and feeling is he scared.
Could I have done something differently. Will we ever be happy again.
I just want my Spencer back please God.
UPDATE #19
Hi everyone I just wanted to thank you all for your prayers and support when I posted my last update. Yesterday I just felt extremely overwhelmed. Your messages made me feel like I wasn't alone and that I can do it. You all seem to know what I need and for that I'm eternally grateful!
Talked to Spencer's doctor today and she got a 2nd intensivist to look at him they both along with his respiratory therapist feel he needs a tracheodomy.
I'm so sad for Spencer he won't be able to speak right away. I miss his voice so so much. He will be able to mouth words.
I do want him off the vent but I really hoped we wouldn't have to go down this road. I just feel bad for him and wonder when the poor kid will get a damned break.
It's all the unknowns that overwhelm me and I need to be more patient but it is so tough.
He has lost a lot of his upper body strength and neck strength to hold his head up. We don't have a vehicle with a lift nor do we have one in his room because he's always been able to do his own transfers. He'll probably need a new chair too.
My oldest son and I talk several times a day I'm so grateful for him and the Peas! I'm alone for the majority of the time my husband only comes a few times a week and he doesn't really comfort or support me. It's not about me but I really wish he's at least ask how I am or even bring me a meal.
We had Spencer sit in a recliner type chair yesterday evening and they did it again today. I think he enjoyed it and was able to stay awake for about an hour and a half. I used a laminated alpha keyboard to get him to spell out some answers to questions. His oldest brother did a video call with him and asked him some questions in their chat. It brought tears to my eyes to see him try and communicate he did really well with it!
They said some of the things he's been doing head nodding hand gestures and the staring off into space could be what they call ICU delirium. It's rough to see him do that stuff.
The tracheodomy will take place tomorrow or Wednesday by the sounds of it.
My hope is that this will speed up his recuperation. I'm hoping to get more of the plan for Spencer in the next few days. He is the driver but I really need to know what support he and I are going to get. We live in a really tiny town don't even have a traffic light or hospital. Just really concerned about what the plan is to get him as mobile as possible and what assistance we will get.
Please know that I read each and every post and message! I read them often they really help get me through the long days and I know they are helping my sweet Spencer!
UPDATE #20
Today was a busy day for Spencer this morning when I got to the hospital and went into his room he wasn't very responsive and wouldn't answer my questions or answered them incorrectly. That always upsets me when he does that because I'm always wondering is it ICU delirium or is there something else going on. After I talked to the nurse about how his night went and how he was for her I then went and talked to him some more and then he seemed more responsive and was actually engaging with me so that made me feel better.
They've started sitting him up in kind of a lounge-type recliner and I think that's helped him with his recovery. During his rounds the doctor said that she thought that a lot of the things I've been seeing are because of ICU delirium. She said that she was going to do a bunch of blood work on him to make sure that the delirium wasn't caused due to an underlying infection.
I also talked to the doctor about my concerns about what the plan was for Spencer and how I'm not only a planner but a worrier she told me that once the trach is put in that they are going to try and get him to have more periods of sitting up, trying to get him into his wheelchair and even getting him outside because now he'll have more freedom with the trach.
She also went on to say that although his journey may be long she and the other intensivist felt that he could get back to his baseline before all of this happened. That made me feel really encouraged and hopeful for Spencer.
A She also talked about what will happen once he leaves ICU. He will go up to the neuro floor and from there he may even go to a rehab facility or a part of the hospital that just focuses on rehab. It will just depend on how well Spencer does in the next few weeks. Right now the focus will mainly be on getting him weaned off the vent getting him into a smaller tube for his trach and trying to combat the delirium that they feel he's experiencing.
After rounds were done they took him out of the lounge chair and had him sit up on the side of his bed he had to struggle to keep his head up but I kept on encouraging him and you could see he was really trying to keep his head up and straight. It will take a bit of work but I think he can get there! While he was sitting up the respiratory therapist worked on getting some of that phlegm out of his chest and him doing some deep breathing in and out he worked really hard trying to help the therapist. It was great to see him engaging and trying to help with his therapy.
This afternoon he had his trach put in the doctor said it went very well and that they were pleased! When I finally got into the room to see him he just looked so much more comfortable and it was so great to just see his face with without all that gear and the tube in his mouth. When I asked him if he was happier without the tube he nodded yes. He's not quite at mouthing words yet and he said his neck and throat is quite sore but I'm hoping in the next few days will be able to mouth words. I can't wait till he can tell me he loves me or even just says hi Mom!
It's such a small world while I was waiting in the family ICU waiting room another family was also waiting for their loved one to also get a trach done. Well I was sitting there I heard them mention a name that was rare and was also the name of a guy I went to High School with so I said to them did you just say such-and-such name and they said yes. I said I know someone who has that name. The man said is he from Drumheller? I said oh my God he is I went to school with him and actually worked with him at my job after school! he said he was really good friends with him how crazy is that!
I just want to thank everyone for all their prayers, love, and support for Spencer and for me and my family! I really really do appreciate it! I know I keep telling you this but your support makes all the difference!
I realized that on my new phone that I don't have to type everything I'm able to just speak into the mic and let it do the typing for me so hopefully I can respond to more of your questions and comments and messages.
UPDATE #21
Hi everyone! Sorry I didn't update you all sooner today Spencer had a really busy day again today and it was a good good day!
So yesterday as I told you all he had a trach put in. Last night they monitored him with his trach and felt that it was appropriate to try and take him off the vent today and he's been off the vent all day and doing very well! They will try to keep him off the vent and see how he does overnight. This is a big step for him and I'm just so happy and proud of him too! He's working so hard to try and get better! The respiratory therapist today took a look at his trach and cleaned it and said it was healing really well she was really pleased.
Today he also sat up on the bed they call it dangling because he has his legs dangling over the edge of the bed he still needs help of course sitting up. I and his physio team can see he is getting stronger and he is really trying when they tell him to sit up straighter and to try and hold his head up.
They did some respitory exercises on him as well and asked him to cough really hard. He was able to cough it out through his trach!
As the day progressed I could see little glimpses of my Spencer and it made me feel so good! Of course I told the nurse this and I said I know you don't know my Spencer before all this happened but I just know that he's in there and that he's fighting to be the way he was before this happened to him. The doctor came in and talked to me and said how pleased she was with his progress with the trach and when I told her about seeing little glimpses of him she said that's what I love to hear from the loved ones. She said we're going in the right direction!
Later in the day he was laying in his bed and he was moving his head back and forth and I said to him Spencer is something bothering you and he nodded his head and then he started kind of waving his hand in the air. He crooked his finger and I said do you want me to come over there and he nodded his head yes. I said are you trying to tell Mom something and he nodded yes. I said do you want to try and spell it out on your alphabet board and he said yes and then I said to him how about if I say out each letter of the alphabet and when I say the right letter of the word you are trying to spell you nod your head yes and we'll spell out the words. So he spelled out the word head and I said to him are you trying to say you have a headache and he shook his head no. I then said are you trying to say your head is itchy and he said no. So then he spelt of and I said you want the head of the bed moved and he said yes. It was just so great to sees him communicate! He also spelt out hi and I love you with his finger to his oldest brother when he face timed him.
I truly believe your prayers and support are making the difference for Spencer and for that I can never thank you all enough! God is watching over him and answering our prayers!
UPDATE #22
Spencer had another day of working hard to try and get back to where he was before this all happened to him. His team is making a great effort every day to get him sitting in his recliner chair and getting him sitting up on the edge of the bed. He's working on getting his lungs stronger and getting his upper body and trunk strength back in order to hold his torso up straight. They placed a full length mirror in front of him today to help him to see what he needs to work on. I can see the determination in his eyes as he works hard to be able to get back in his wheel chair.
His boss from the store he works in called today and he was so excited and happy to her from her and his co-workers.
He's able to stay awake and engaged more and more and for much longer periods of time!
This afternoon he was able to go and sit on the ICU terrace he hasn't been outside for 2 weeks he really enjoyed feeling the sun on his face!
He was off the vent overnight and did very well the Dr was very happy. She said they will continue to try and ween him to a smaller trach tube and hopefully being able to speak. She said he may need some speech therapy to help him get those muscles needed for speech stronger.
I've had some peas ask if they could send Spencer get well cards so I'm going to post my address if you would like to send a card
Spencer Lang
Box 322
Trochu, AB
T0M 2C0
Canada
Thanks again everyone for your continued support, love and prayers it really touches my heart And I know they are really helping Spencer!
Much love,
Kathy
I'm adding a photo of Spencer enjoying the sunlight today!
UPDATE #23
Update and a bit if a vent I guess. So I missed rounds so his nurse informed me he's being transferred from icu to the Neuro floor probably early next week. I'm really apprehensive of this a lot of mixed feelings. Part of me is excited for this step the other part of me is the worrying mom.
Worried about level of care for monitoring him, will respiratory and physio be doing all the things they do now sitting him up in a recovery chair and all the upper body stuff to get his trunk and head strength back as well as getting his lungs back to being healthy. I'm sure my worries are unjustified but as his mom I can't help but worry. He's doing better every day and I just want to keep him on that upward trend.
So then after I rationalized that all in my head and felt a bit better I get a call on my cell. It's some secretary for some neurosurgeon I've never heard of. Firstly English was not her language she was fluent in. Secondly she says he's wondering if Spencer is still in the hospital uh no shit he's in icu.
I said I'm confused I've never even heard of this Dr he doesn't even know if my son is still here but he's been internally referred to be his Dr after he gets out.
That will be a HELL NO I'm thinking.
Also why would they think I would just be ok with this stupid idea!
I said I don't understand you and you are upsetting me and I hung up.
I told the nurse and she was confused as me. I said to her given the shit he's been thru I am not about to bring some new dr up to speed. Also I said I found out after the fact that the Dr who introduced himself to me as the Dr who would preform his trach actually only over saw a resident who did it. I think I should have been informed of that before hand. His intensivist even said it would be the trauma surgeon doing it. Had I known that I would have declined and said I only want the trauma surgeon doing that procedure. I get it's a teaching hospital but they can learn on someone else if you kwim.
Okay now something that's not vent sounding.
Spencer did his physio and oh my gosh he has improved so much. The physio person said the improvement between today and Wednesday (the first day she became part of his physio team) is fantastic! She saw a ton of improvement. Im so damned proud of him! Yay Spencer!
He's having a well deserved rest now and this afternoon he is going outside again and his boss is going to stop in and see him.
Again thank you all so much for your well wishes, prayers and support I don't have the appropriate words to tell you all how much they mean! You are all rockstars!
UPDATE #24
Sorry I didn't post yesterday. The day was kind of busy and when I finally went to bed I realized I didn't post an update.
Spencer was having a bit of an off day mood wise. Was quite despondent. If i were him gosh I'd have ton of crappy days.
They gave him a shower yesterday and they said he seemed to enjoy it. I'm sure it felt wonderful to have his hair properly washed! They have some sort of stretcher type apparatus that they can lay him in as he has his shower.
His dad and brother came to spend the day. Of course he brightened up a bit for dad. I think he is thinking mom is here everyday dad is just here sometimes lol.
We went outside for an hour or so he enjoyed that.
Dad stayed with him while my son and I went to a restaurant to eat. That was a nice switch from the hospital food I've been living on for 95% of the time. It was also great to spend time with just him. I worry he gets lost in the shuffle since dad is so busy at work and older brothers don't live near us. He really liked it and gave me a huge hug and said how much he liked doing that. He is really close to Spencer and very much a momma's boy! This has been tough on him.
I keep missing rounds since the new intensivist started I swear he does them at 7 am! So every Friday a new one starts for the week. Spencer's one last week was awesome not only did she talk with you during rounds but she also touched base after that to give results she may not have had during rounds.
This new Dr who btw was the trauma surgeon who said he was doing his trach but didn't hasn't talked to me once. In fact I haven't seen him once on the ICU pod since his week started on Friday.
I noticed yesterday one of the patients in his pod has been moved. My husband said oh yeah she wasn't here last time I visited. She was wheeling herself all over the unit. They haven't filled her room. I wish I knew why Spencer has to leave as it seems there isn't a need for the beds in this pod. They only have a max of 6 to 8 patients and there are 4 including him right now. He was definitely a patient with higher rehab needs then the person who left. I find it confusing and frustrating some days!
My MIL has been mia not surprising she never has been a hands on GM. She annoys the crap out of me but I know that Spencer is probably wondering why she quit coming to see him. Before this even though she was a hit and miss GM he would text her every day to see how she was and chat with her. Between her and my mia friends it's been an eye opener.
I'm so thankful for my boys doing all they do to cheer him on. My husband can't be here much but he is one of his biggest cheerleaders in his corner.
And lastly I'm so grateful for all of you! I feel bad when sometimes I can only give your posts a like but please know that behind that like is a ton of love and deep appreciation!
Spencer was more like himself this morning when I got here yay! His older brother is coming to see him sometime today he will enjoy that!
Right now physio is working with him. Unfortunately on the weekend they don't dangle him on the side of the bed and work on his trunk and neck strength. They work on that stuff but not as intensively. He works so hard at trying to cough and sit up without support and to hold his head up!
UPDATE #25
So the day started crappy because he had the same shitty nurse. Like I said earlier he was not showered or sitting in the chair and his face was dripping in sweat.
I could tell something was bothering him for the past few days. To me he looked like he was in pain and yesterday he said his mouth was sore. Today same thing looked like he was in pain so I asked him to spell out on his alphabet board where the pain was and he said his jaw was sore. So then to make sure that it was his jaw I touched his face and his cheek and jaw area on one side and then the other and he said it was his right side. I told his nurse and she said that she'd put a call in to the intensivist so when he showed up I was telling him what Spencer had told me so he then examined him. When he touched a certain area of his jaw Spencer just about jumped out of his chair he he was in so much pain. His doctor said wow good catch mom and he thinks it's a duct that sometimes got infected he's on antibiotics now and they also did an ultrasound on his jaw and tomorrow I should hear the results of that. His nurse finally got him showered and in his chair and he did go outside for a little bit it was really hot out so we didn't stay out too terribly long. When physio came in to do their work with him getting him to sit up, helping him get the secretions out of his lungs, working on his posture I said to her last week there were two of you doing his Physio and you were dangling him over the side of the bed. I think that works a lot better than sitting in that recliner chair. I then went on to say they did that on the weekend and it just seemed like he didn't try as hard and he wasn't able to cough as well.
Of course she said oh no this works just as well as dangling on the side of the bed. I said well as an observer and I know I'm not trained like you are I just could tell that it wasn't as successful. So she went and did her physio with him sitting in that chair and when it was all said and done she said to me you were right he doesn't work as hard this way and he doesn't get up nearly the secretions as he does when he's sitting on the side of the bed.
I just found today so frustrating because it just seemed like no one would listen to me and valued what I was saying.
Then later in the day Spencer was kind of half sleeping and I was just rubbing his arm and he kind of woke up and startled a little bit. He then settled and then all the sudden started looking like he was in pain again his heart rate went up his oxygen level went down and he just got this panicked look in his eyes. His eyes got big as saucers and he kept grabbing at the side rail beside his head like he was panicking so I called his nurse in the same crappy one and asked her tocome and look at him. She comes in and he's still in the middle of that episode and she says so do you want to be repositioned!
Seriously that was not what his problem was and I said he's in pain or something is startling him. I said he did that the other night in the middle of the night and the nurse wondered if you had bad dream but obviously hes awake now so it's not a dream.
Yesterday he wrote the word drink for me and thirsty for his brother! It took a bit of work for him and some figuring on the word thirsty lol.
I think Spencer is suffering from a bit of depression he seems down the past few days except when someone visits or maybe he's just sick of looking at me for 10 or 12 hrs lol.
The respiratory therapist said that possibly Thursday they will put in a smaller tube for his trach and remove the cuff. Doing this will enable him to talk and eat soft foods I'm so happy and excited for him!
I'm hoping his routine will be more solid the rest of this week and they will go back to the more intense therapy.
It sounds like it might be a bit of a wait for going to the rehab unit apparently there is a bed shortage there and a few people ahead of him. So he could be in ICU for a while yet.
UPDATE #26
Spencer was in better spirits today when I got there!
Thankfully he had a different nurse. I've been so thankful for all the fantastic medical staff he's had looking after him.
They took my advice and had him do his physio and respiratory therapy while sitting on the side of the bed. He worked so hard I had tears in my eyes as he tried raising his arm over his head as he balanced himself on his other arm/elbow. He never once hesitated when he was told to try something.
His jaw and cheek area are still so sore. He looks like he is in so much pain it's hard to watch. They have decided to give a stronger pain med as the Tylenol isn't working.
Tonight his dad came for a bit and brought a laptop to see if he could communicate with it.
This is why I said Spencer is literally the kindest and nicest person I have ever known. So his pain was bad and the nurse had given him the stronger pain med and dad had to leave but Spencer wanted to try laptop even though he was in so much pain.
We said type what ever you feel like or can.
This is what he wrote:
Hi how are you?
OMG the poor kid has been thru a ton of stuff and is in pain and he's asking about us. I could have bawled. I said to him my gosh you amaze me Spencer!
I am in awe of him and his fight and determination and his unending love and concern he has for us even though he is having such a rough go!
On Thursday they are planning to put a smaller tube in his trach and with this he will be able to talk for short periods I'm excited for him and so looking forward to hearing his voice again, I've missed it so much!
Thank you for all your support, prayers and love you are all so amazing!
UPDATE #27
Yesterday Spencer was still in tremendous pain they bumped up the amount of narcotics they are giving him and that helped thru the night.
He had a pretty good day yesterday despite that and worked really hard in physio.
The last 2 days he has had a few nurses help with his care or saw him on his way to the terrace and they all thought he was looking much better and brighter, that made me happy! As his mom you sometimes wonder if you are just hoping you see improvement.
He just had a ct scan this morning just to make sure the shunt is not a source of the pain or infection. Haven't heard the result yet. The side of the face which is sore is definitely a bit warmer to the touch. One of the nurses who has had him as a patient and is the cover nurse today wonders if it's a tooth or even some wisdom teeth coming in. I've been thinking the same thing ugh.
Right now they are changing out that trach tube to a smaller one. They booted me out of the room. I hate not being there when they do stuff to him.
ETA The procedure went very well. There hope is as they wean him to this he will be able to have the trach removed completely. They will finger cap it to see how his breathing is and if it is good they will try working it for a short period to see if he can talk.
After this he has physio. So a busy day so far for him!
ETA
He did amazing at physio he not only worked really hard at sitting up and getting up from a prone position but he was able to cough so hard he coughed the secretions right out the trach tube and didn't have to be suctioned down the trach!
He is getting excited to see his brother this weekend. I'm hoping that my 2nd oldest can come visit at the same time as oldest and dad and youngest. I think having his whole family here would really brighten Spencer's spirits!
While I was in my room last night I was watching coverage of Hurricane Harvey and the utter devastation it has left.
They told the story of an expectant mom who had a scheduled C section during its wake and showed their home and vehicle which was destroyed. They had other children and now a precious newborn.
Another story was of a premature baby that had to be airlifted to another hospital and the parents couldn't go with her. They later were reunited with their baby.
As I heard their stories I was reminded of the hope and good that comes out of devastating situatuons.
This experience with Spencer has been devastating in so many ways but the hope and strength I get from him and all of you comforts me and gives me strength!
UPDATE #28
UPDATE
Having some set backs! I just wish Spencer could get a break!
Yesterday his pain in his cheek and jaw got really bad he described it as a 12 out of 10. It got so bad he tried hitting his head.
They don't think it's dental they gave him a ct yesterday or the day before, sorry the days seem to run together here. They said it's just as telling as a dental xray so they don't feel it's a bad tooth or wisdom teeth. Plus they did an oral exam.
They are now thinking it's a nerve pain. They tried a dose of a nerve medication yesterday it will take a good 24 hrs to see if it works. We may have to go thru a few different ones to figure it out as nerve pain is hard to treat and diagnose.
His pain is the same today. They had to increase his pain meds substantially to keep the pain under control.
ETA
Just finished talking to the Dr and he thinks it's Trigeminal Neuralgia (5th nerve). The cause in his case is unknown but the pain can be debilitating and chronic.
They added another painkiller to his regiment but it didnt touch the pain They will stick to the one They started him with and are increasing the dosage. They are going to try and get him to a point where he isn't writhing in pain.
The nerve drug they put him on last night could take as long as a week to start seeing some results. His nurse today has been really great and told me her husband suffers with it and that it may take a bit to find a nerve pain med that will work.
They would like to try another med but they said he has an elevated liver enzyme. The Dr and his nurse were confused as to why a liver enzyme was checked they don't know if it was checked off by accident on his lab requests or if there was a reason for the test.
The bad thing about the narcotics is he gets very drowsy and it makes it a bit challenging for Neuro exams.
A few days ago they changed his trach to a smaller one this is a step in the right direction. They also took out the cuff/balloon. He adjusted very well to it.
His level of secretions and amount of suctions increased but he is able to cough them up and out his trach most of the time. Which is great that means his cough is getting stronger!
The secretions are not as thick now but there's more of them. They think he is having more oral secretions which is making him have more trach secretions so they put him on a patch to try and reduce those.
Today though he started coughing huge amounts of brown secretions. They were almost running out of his trach. They are going to put the cuff back in and change him to a wider trach.
He has a mask that sits just over his trach site pumping moist 02 this is to keep his secreetions loose, it was at 28% they've bumped it up to 40%.
On of the reasons for the brown increased secretions is that he might have aspirated from his feed tube is that is one possibility.
ETA
Since changing out the trach and putting the cuff back his secretions seem to be better.
I see him making progress but now this debilitating pain is so hard to watch him struggle with!
Matthew came last night on the plane and has been trying to keep Spencer entertained and his mind off his pain. He wrote out a list of motivational quotes and has been reading them to him. His dad and youngest brother just left.
Matthew being here has been great he and Cooper are so great with him. Sadly my 2nd oldest couldn't make it today.
Apparently my husband's truck has been acting up again and almost quit on his way here. He had had issues with it for a long time. He told me he was going to sell it when he gets home and then use my car and we'd get a new vehicle ugh. He said while you're sitting there you can look for cars online. Uh that would be a NO!
First of all I can barely focus on Spencer some days when we have days like today so me looking for a car while here is not going to happen. I help with Spencer's care etc I don't have the time or energy to put into researching vehicles.
Secondly we don't know yet what kind of vehicle we may need for Spencer and honestly we can not afford a vehicle right now. The hotel and food and gas costs are adding up and please don't interpret that as complaining I will absorb any financial strain to be here for Spencer! But stress wise I can't deal with another financial strain as well but he is stubborn and doesn't get it. He doesn't even ask how I'm paying the hotel bill.
As Spencer's nurse said today has just been a shitty day!
ETA
I forgot to add on Thursday they were going to transfer him to the rehab Neuro unit but because of his unmanageable pain and increased suctions/secretions he can't be transferred out of ICU.
UPDATE #29
So yesterday Spencer really struggled with pain but still managed to have a good visit with his brother.
They figure the brown increased secretions were from his feed tube the feed was going in his lungs instead of his esophagus so he's got pneumonia.
Because they were able to get his secretions down they moved him up to the Neuro rehab floor late yesterday afternoon yay!
I was so nervous but thankful and when Matthew and I left late last night we both said gosh he is doing better we just need to get this Trigeminal Neuralgia under control.
This morning I had to take Matthew to the airport at 6 am so when I got back to the hotel I went and slept some more and got to the hospital later then usual.
As I was walking down the hall towards the main entrance and elevators I heard them call a code 66 unit 112 and for some reason I knew it was him. This code is called when a patient is in extreme distress.
When I got to his floor it was him!
They think he had a seizure. His respiratory rate also went down.
His pain was not being managed overnight and this morning with the narcotics they were giving him so they tried morphine this am they don't feel it was that but he developed a blank stare and wasn't responding they gave ativan I think and said he came back but several minutes later did the blank stare did another round of ativan and came around was interacting but happened again and his respitory rate went down so they called the code.
They took him for a ct and they see a pocket of fluid beside his shunt. They are going to do a tap and see if it's infected. They are also going to do a 24 hr EEG to see if he's having continuous seizures.
He was moved back to ICU but not the one for stable patients.
I'm so scared for him and I just need him to get better. I hate that Spencer is facing trial after trial! I want to take away all his pain and stress.
My husband isn't coming he has a cold and said he doesn't went to give it to him.
I hate this rollercoaster and now having to be back in the ICU and the doom and gloom that this pod has compared to the stable ICU pod and unit 112.
Spencer needs some good news God!
They are doing the tap right now so I'm in the family room waiting.
UPDATE # 30
Yesterday was a rough one for Spencer and me.
I stayed at the hospital until 330 a.m. He was having some delirium episodes last night. He would point to things in the room or try to swat at things. Between the seizure and the amount of strong narcotics and anticonvulsants the delirium was unavoidable. They have cut back on the narcotics today because of the delirium and because his LOC is not where it was before this last set back.
He had bad delirium today with me this afternoon he got panicky and his eyes got huge and he didn't know where he was or who I was. Sucked to see him like that it broke my heart.
Tomorrow I'm hoping we can get in the recliner chair maybe outside and get him interacting more so we can stop that delirium!
They ended up only doing the EEG for an hour and didn't see any seizure activity. That was good to hear but they don't really have an answer for why he had one.
He did end up getting pneumonia from his feed backing up. That just pisses me off.
His cough is weaker now I think until all those drugs are out of his system.
From the ct they did yesterday they saw a pocket of fluid between his brain and shunt. They did a tap on it to check for any infection or bugs. So far it looks good. His pupils are 2 different sizes since what went down yesterday. They gotten closer to being symmetric but there is still a difference.
It's looking like he's developed thrush too ugh.
His pain from his Trigeminal Neuralgia was pretty good most of the day but around 8 tonight he had some tremendous pain. Although they've cut the dosage from 2 mg to .5 mg he still got extremely drowsy from the smaller dose.
They are giving him 2 really strong antibiotics for the 2 pneumonia bugs he has, yes 2!! This will also cover any bug from the tap they did. He is still in isolation for the MRSA bug he has.
Late this afternoon they moved him from c pod to b pod ICU which is where he was for awhile. It's for more stable patients so that's a plus. The c pod was very intense and depressing and stressful so I'm glad hes out of the that icu pod!
He could be in b pod for awhile because same as before it's hard to get a bed on the Neuro rehab unit and he can't share a room because of the MRSA.
Although this may just be a spped bump in some ways I feel in some ways we are back at square one.
I'm so frustrated for him and sad too.
When he got to unit 112 on Sunday evening he looked happy and when his pain wasn't bad he was engaging and not the drowsy kid from those first days and now we're back to those days.
I'm back to having extreme knots when I leave him and that utter exhaustion.
I'm hoping and praying Spencer has some great days ahead of him and that we can get him back to where he needs to be and where he was before this setback!