kate
Drama Llama
Posts: 5,517
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Feb 6, 2018 0:50:24 GMT
God bless you and Spencer both. I'm so sorry to hear he has an infection... That sounds so trite, when really I mean that the whole situation just STINKS and neither of you deserve such suffering, and I can't make any sense of it, and so I'm working really hard to put you both in God's hands while continuing to wish every good thing for you.
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Post by scrapmaven on Feb 6, 2018 1:13:24 GMT
I think weekly therapy is a great idea for you. This has been a major trauma and maybe it's time to finally get some serious professional support in order to release the strong feelings and also to gain energy going forward. I see this as a very good move for you.
As for PEG tubes I would encourage you to surf oley.org (the Oley Foundation)a support and information group for tube feeding. You'll get tons of information both good and bad on tube feeders. Many of us have tubes for different reasons and it's not always a permanent thing. It truly depends upon the disease or problem and the patient. Tube feeding seems awful and daunting and at first it is. That quickly ends and it becomes very routine and normal. If I didn't tell you about it you'd never know that I have a tube. It's a means to nutrition. Spencer will get nutrition until he can safely eat orally. Nutrition means faster healing, because it will give Spencer more to fight with. Is your son being fed via nasal gavage? IMHO, a peg tube is much comfier. I can't stand tubes in the nose. It really bothers me, but I don't even feel my tube in the abdomen. Please look at Orley and decide what is best for your boy. Just know that tube feeding isn't the end of the world. I'd rather have a chocolate lava cake, but this tube is my lifeline and I'll take it, because I'm here typing at you and sitting w/my family. W/o nutrition things are very very bad.
I am very pleased that you are starting therapy. PTSD makes complete sense in your case. You've had months of watching your baby suffer and you're suffering, too. You have lots of pea friends supporting you along the way.
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AmandaA
Pearl Clutcher
Posts: 3,502
Aug 28, 2015 22:31:17 GMT
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Post by AmandaA on Feb 6, 2018 1:25:53 GMT
canadianscrappergirl re: needing a primary care doc... I have no idea if this works the same where you are, but in the health system where I worked here the hospital's residency programs (internal medicine, family practice, obgyn, and peds) all had an outpatient clinic as part of their program. Hear me out- I know you are sick of residents, and I get that- they are operating under the supervision of the program faculty. Ours provided great care and was pretty easy to get into for appointments. You might ask around about that at the hospital. I would think that they would be especially understanding of your current situation as well which might really make it a good match for you. I am so glad to see that you are taking steps to take care of yourself right now too.
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Post by Delta Dawn on Feb 6, 2018 1:27:23 GMT
Wellbutrin is a drug I am very familiar with and if it works which it might work really well, will give you a little kick in the right direction. Life is just better on it than off it. Don't be afraid of it at all. It really makes roses smell sweeter.
I am going to do a lot of praying for you and Spencer. Sending all my love.
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Post by canadianscrappergirl on Feb 6, 2018 2:27:27 GMT
I think weekly therapy is a great idea for you. This has been a major trauma and maybe it's time to finally get some serious professional support in order to release the strong feelings and also to gain energy going forward. I see this as a very good move for you. As for PEG tubes I would encourage you to surf oley.org (the Oley Foundation)a support and information group for tube feeding. You'll get tons of information both good and bad on tube feeders. Many of us have tubes for different reasons and it's not always a permanent thing. It truly depends upon the disease or problem and the patient. Tube feeding seems awful and daunting and at first it is. That quickly ends and it becomes very routine and normal. If I didn't tell you about it you'd never know that I have a tube. It's a means to nutrition. Spencer will get nutrition until he can safely eat orally. Nutrition means faster healing, because it will give Spencer more to fight with. Is your son being fed via nasal gavage? IMHO, a peg tube is much comfier. I can't stand tubes in the nose. It really bothers me, but I don't even feel my tube in the abdomen. Please look at Orley and decide what is best for your boy. Just know that tube feeding isn't the end of the world. I'd rather have a chocolate lava cake, but this tube is my lifeline and I'll take it, because I'm here typing at you and sitting w/my family. W/o nutrition things are very very bad. I am very pleased that you are starting therapy. PTSD makes complete sense in your case. You've had months of watching your baby suffer and you're suffering, too. You have lots of pea friends supporting you along the way. Thank you!! I will look up that link. Spencer had an NG and he isn't bothered by it at all. I will do a bit more research but at this point I feel he's been thru enough and if the NG was bothering him I would probably be more inclined to go for the PEG. I think your reasons are very valid and you bring up some great points but in Spencer's case I feel it's more for the ease of the staff and frankly I give not one care about easing their work it's about Spencer if you kwim. He has fantastic nurses but in the end his needs and comfort is what matters and I think he's at his limit with the invasive stuff. I'm not really sure why I think it's more for ease of care I could totally be way off. I'm very optimistic about the sessions.
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Post by canadianscrappergirl on Feb 6, 2018 2:31:33 GMT
canadianscrappergirl re: needing a primary care doc... I have no idea if this works the same where you are, but in the health system where I worked here the hospital's residency programs (internal medicine, family practice, obgyn, and peds) all had an outpatient clinic as part of their program. Hear me out- I know you are sick of residents, and I get that- they are operating under the supervision of the program faculty. Ours provided great care and was pretty easy to get into for appointments. You might ask around about that at the hospital. I would think that they would be especially understanding of your current situation as well which might really make it a good match for you. I am so glad to see that you are taking steps to take care of yourself right now too. Thanks so much!! I will ask the charge nurse on Spencer's unit about that. I'm going home for a few hrs tomorrow and I'll also inquire at the medical clinic. We have a really hard time keeping GP docs. Most don't stay and aren't very competent but maybe I'll get lucky!
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Post by canadianscrappergirl on Feb 6, 2018 2:35:43 GMT
Wellbutrin is a drug I am very familiar with and if it works which it might work really well, will give you a little kick in the right direction. Life is just better on it than off it. Don't be afraid of it at all. It really makes roses smell sweeter. I am going to do a lot of praying for you and Spencer. Sending all my love. Thanks that good to know. Many years ago after Spencer was born I went on an antidepressant and when I went off it I had some terrible side effects/withdrawal. The Dr said this one isn't known for that. Weight gain was another one. I'm already heavy and can't afford to gain any more weight. I'm hoping it will help. I'm getting it filled tomorrow by my pharmacist I want to ask him about it as well, he is very easy to talk to.
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Post by canadianscrappergirl on Feb 6, 2018 2:38:05 GMT
I think weekly therapy is a great idea for you. This has been a major trauma and maybe it's time to finally get some serious professional support in order to release the strong feelings and also to gain energy going forward. I see this as a very good move for you. As for PEG tubes I would encourage you to surf oley.org (the Oley Foundation)a support and information group for tube feeding. You'll get tons of information both good and bad on tube feeders. Many of us have tubes for different reasons and it's not always a permanent thing. It truly depends upon the disease or problem and the patient. Tube feeding seems awful and daunting and at first it is. That quickly ends and it becomes very routine and normal. If I didn't tell you about it you'd never know that I have a tube. It's a means to nutrition. Spencer will get nutrition until he can safely eat orally. Nutrition means faster healing, because it will give Spencer more to fight with. Is your son being fed via nasal gavage? IMHO, a peg tube is much comfier. I can't stand tubes in the nose. It really bothers me, but I don't even feel my tube in the abdomen. Please look at Orley and decide what is best for your boy. Just know that tube feeding isn't the end of the world. I'd rather have a chocolate lava cake, but this tube is my lifeline and I'll take it, because I'm here typing at you and sitting w/my family. W/o nutrition things are very very bad. I am very pleased that you are starting therapy. PTSD makes complete sense in your case. You've had months of watching your baby suffer and you're suffering, too. You have lots of pea friends supporting you along the way. Sorry I wanted to add TY for sharing your story I'm sorry you had such health struggles and I'm glad you are now getting the nutrition you need. I'm sure it was a daunting decision to make even knowing it would make you healthier!
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Post by LavenderLayoutLady on Feb 6, 2018 3:28:35 GMT
You are so strong.
I have a lot of optimism for you starting meds, and talking to someone. It's definitely a step in the right direction.
I'm sorry to hear of Spencer's infection. Hopefully it'll be cleared up quickly, and he can make strides forward toward better health.
I will continue to keep you and Spencer in my thoughts and prayers.
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Post by garagesaler on Feb 7, 2018 0:27:44 GMT
So sorry Spencer has another blood infection. As far as a PEG tube, my hubby has ALS, Lou Gehrig's disease. When he was still well enough, he had a PEG tube put in. He can still eat normally, as I purée foods for him. We are getting closer to needing to feed him with it. He really got it as an option for this later stage. He can get medicines this way, as well as nutrition. If Spencer is having trouble swallowing, it might be hard for him to take medications orally. If he had a PEG tube, they could give him pills or Ensure or whatever he needed through it. It is just another way to help him fight through all the infections and what he is going through. To maintain my hubby's feeding tube, I just have to use a syringe type of thing to run water to flush out the tube. It is not hard. Even if Spencer has a feeding tube, when he gets out of the hospital, he may not even need to use it. This may be a temporary need for Spencer to use while he is weakened due to infections and surgeries. Just hearing the term feeding tube is scary, but it is not that bad. Just another way to administer medication and nutrition when it is needed. Keeping you and Spencer in prayer.
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Post by canadianscrappergirl on Feb 9, 2018 18:39:08 GMT
So sorry Spencer has another blood infection. As far as a PEG tube, my hubby has ALS, Lou Gehrig's disease. When he was still well enough, he had a PEG tube put in. He can still eat normally, as I purée foods for him. We are getting closer to needing to feed him with it. He really got it as an option for this later stage. He can get medicines this way, as well as nutrition. If Spencer is having trouble swallowing, it might be hard for him to take medications orally. If he had a PEG tube, they could give him pills or Ensure or whatever he needed through it. It is just another way to help him fight through all the infections and what he is going through. To maintain my hubby's feeding tube, I just have to use a syringe type of thing to run water to flush out the tube. It is not hard. Even if Spencer has a feeding tube, when he gets out of the hospital, he may not even need to use it. This may be a temporary need for Spencer to use while he is weakened due to infections and surgeries. Just hearing the term feeding tube is scary, but it is not that bad. Just another way to administer medication and nutrition when it is needed. Keeping you and Spencer in prayer. I'm so sorry about your husband it must be so hard to see him battle such a terrible disease! I can't even imagine the pain you are all going thru. I'm still on the fence about the PEG but I will definitely take your experience with it into consideration! Thank you so much for sharing your story and for your support!!
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Post by mikklynn on Feb 9, 2018 19:00:00 GMT
I am happy to hear you are taking care of yourself. It's important and you are worth it.
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Post by canadianscrappergirl on Feb 9, 2018 20:16:37 GMT
UPDATE
So we got a ton of snow here yesterday so I was unable to get to the hospital.
I tried doing video chats and texting with him since Wednesday night but he didn't respond to most of my texts or talk at all during the 2 or 3 video chats not even a hi.
He had a hallucination on Tuesday he started crying and got really agitated. Wrote in his phone that he saw someone take his dad.
When he got the last drain in he was talking a bit and I felt like he was engaging. It was at -6 then. They bumped up to -4 and he seemed to go back like I described above. So when I came in today I checked and they had raised the drain to -2 last night at 5.
I talked to some of his team and they tell me he's engaging. Yet myself and his dad aren't seeing it.
When I got here this morning he couldn't even say hi. After not seeing me for a day I thought he'd at least say that.
It's just so damned frustrating.
He got transferred to the chair they have for him when I got here. As they were raising him I noticed a pressure sore developing just under his butt it's twice the size of a quarter. I brought it to his nurses attention she said he's developing another on his hip.
As they were lifting him to the chair with the lift I broke down. He's like a baby and as I watched them I just kept thinking when will this get better, will it get better for him? What is he thinking, is he tired of it all?
It's so hard to see him so helpless unable to do even the simplest things for himself. It breaks my heart.
The attending came and talked to me about the PEG. He gave all the pros and cons and risks. I asked which presented more of a complication PEG or NG he said he didn't know that.
I said I didn't feel Speech language was investigating Spencer enough to warrant the PEG. I told him about them doing a swallow test several weeks ago and he was able to swallow ice chips but it wasn't looked at since then.
Although I am Spencer's legal decision maker I did discuss it with him and he doesn't want the PEG so for now it is at a stand still.
On Tuesday it was 180 days so 6 months since this nightmare started some days it feels like so much longer.
I went and got my prescription filled but one of the side effects listed is an increase in BP so I will delay taking it until I can talk to the psychiatrist on Tuesday.
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Post by femalebusiness on Feb 9, 2018 20:26:43 GMT
I was so hoping things would turn around for Spencer by now. I am so sorry you are still struggling. I think about you daily.
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Post by jennrs on Feb 10, 2018 2:35:08 GMT
I’m just so sorry he’s been through so much. It’s such a long time and I can’t fathom how you feel. Just know I pray for Spencer and you often.
I remember one time my mom was in the hospital and she quit speaking and they drs did not understand that was not how she was before she got there. It was frustrating trying to get them to understand that.
I hope your appt and medicine help you.
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Post by canadianscrappergirl on Feb 12, 2018 1:23:19 GMT
UPDATE So today his dad came to visit so I decided to stay at the house I'm staying at and do some laundry..Spencer had been texted me and he and his dad were sending texts to bug me and then his dad calls and says Spencer just pulled his drain out by accident when he was suctioning himself.
Ugh I'm surprised this hasn't happened before.
I warm up my vehicle to get here and as I'm driving my car starts sputtering and a warning light comes on. Seriously WTF!
I made it here without it cratering barely.
We are just waiting for them to try and put it back in. They are attempting it in his room. They are really hoping it will work and that we can avoid another surgery.
I broke down telling my husband about my car I said I am so tired of the crap and stress and now this with the car and Spencer.
We are in so much debt and I need a reliable vehicle and if I broke down here I'm all on my own.
I'm just so fucking tired of it all.
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Post by ntsf on Feb 12, 2018 1:32:42 GMT
There is not much I can say but hugs and hugs and hugs and prayers. Thinking of you.
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moodyblue
Drama Llama
Posts: 6,179
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Feb 12, 2018 1:40:04 GMT
I do not know how you're still standing - other than you have no other options. I'm just so sorry you have so much stress, and that Spencer has gone through so much. Six months is a long time.
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Post by grammadee on Feb 13, 2018 4:43:19 GMT
How are you doing this evening? Did they resolve Spencer's drain issue?
How about your vehicle? Could it have been having trouble with all the snow and ice, maybe something frozen underneath? Hoping it is nothing major. You really don't need more problems.
(((((HUGS))))) to both of you.
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Post by scrapmaven on Feb 13, 2018 4:54:22 GMT
I think of you every day. It's just too much for anyone and yet you are getting through it. I'm glad you stayed back while your dh visited his son. You don't need that stress on top of everything else.
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Post by kels99 on Feb 13, 2018 5:46:54 GMT
Is this still a good address for Spencer (and you)? Spencer Lang Box 322 Trochu, AB T0M 2C0 Canada
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Post by Delta Dawn on Feb 13, 2018 7:08:30 GMT
Oh god the car, too?
I hope Spencer's procedure went ahead without issue. That is a worry.
I am glad you had some of a day off while his father was visiting. At least you got some stuff done that needed doing.
What happens this week? Do you just watch and see what his pressures are so they can lower the shunt? I don't know how that works or what I am saying but I am understanding that -5 is bad but 0 is getting better, correct? I hope they can get the intercranial pressure right. I think that's the right term for it. Poor darling, Spencer. Will you tell him we love him. I will send him another card this week.
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RedSquirrelUK
Drama Llama
Posts: 6,744
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Feb 13, 2018 8:31:18 GMT
Big hugs to you both. x
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wellway
Prolific Pea
Posts: 8,770
Jun 25, 2014 20:50:09 GMT
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Post by wellway on Feb 13, 2018 9:02:36 GMT
If anyone deserves a break it is you and Spencer. Hugs to you both, how you are still going I don't know.
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Post by gar on Feb 13, 2018 9:25:38 GMT
Still thinking of you both - can't believe it's 6 months - so hoping you get that break very, very soon.
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Post by Lexica on Feb 13, 2018 10:06:34 GMT
It is hard to believe that 6 months have gone by. I hope they get this pressure situation regulated properly and Spencer starts engaging more. I'm very sorry about your car giving you problems now. You, my dear, are so due for a huge break.
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purplebee
Drama Llama
Posts: 6,734
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Feb 13, 2018 12:08:56 GMT
It doesn't seem to let up, does it? I am praying hard for a big turnaround for Spencer and for you. Hugs, don't know how you are keeping things together. Glad you are taking steps to improve your health.
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Post by canadianscrappergirl on Feb 15, 2018 4:00:23 GMT
Is this still a good address for Spencer (and you)? Spencer Lang Box 322 Trochu, AB T0M 2C0 Canada Yes it is sorry I didn't answer you sooner!
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peasquared
Drama Llama
Posts: 5,457
Jul 6, 2014 23:59:59 GMT
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Post by peasquared on Feb 15, 2018 4:04:24 GMT
Much love going out to you and Spencer today. (((Hugs)))
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Post by canadianscrappergirl on Feb 15, 2018 5:15:55 GMT
UPDATE Hey everyone sorry it's been a busy few days.
They were able to put the drain back in on Sunday successfully thank goodness!
On Monday they did another swallow test on Spencer and they passed him for pureed food and only thickened liquids!
He did really well with the tray he got Monday night but I noticed yesterday that he struggled and even more so today. He still has the NG tube.
Yesterday the Sr resident came and told me on Friday they plan to take out the drain and put the shunt back in! I guess they feel he is well enough and want to get that drain out. He has been cleared of the blood infection but as a precaution they are keeping him on the antibiotics. I'm a bit concerned as to whether he can maintain a working shunt when he is only at a -2 and asked about why aren't we trying to get him above the -2. They feel they need to get him off the drain. I do get that but gosh I just pray the shunt will work I hate the idea of doing the surgery and then having a set back and having to either redo it or put another drain in.
So today when I got here I noticed a ton of blood in the drain catheter. I said to the nurse that is going to cause a problem. Sure enough his drain blocked they've been fiddling with it for almost 4 hrs. They flushed it for the 4th time and it seems to be working but I will have to stay for a few more hrs in case they need to take him to the OR. Although it is now draining they are concerned it may stop again. I am without a car so its just easier to stay for awhile. Apparently since 6 am it's been draining a lot slower ugh!! He complained of neck pain too after dinner.
I'm wondering if this is part of the reason he was struggling with eating. He also had a nap yesterday and today and was having trouble texting on his phone today.
I pray it keeps draining if they have to take him to the OR to replace it they more then likely won't do the shunt replacement on Friday.
The constant worry is never ending.
Regarding my car it was the transmission light that came on and my car has over 310 000 km and is12 yrs old so yeah not good. I've been using a taxi to get around. Husband and I are disagreeing on how much to spend on a vehicle he seems to think we should buy something only a yr or 2 old I am too tired to argue about it. He never listens to me about money.
Yesterday I had my 2nd appt with psych services. We talked about things that trigger me. On Monday Spencer's boss sent me a few photos of Spencer from work with a cake from his last birthday in June. I got very emotional seeing him in those photos. He was so happy in those photos. I couldn't believe how much weight he's lost. I miss that Spencer so damned much.
Another thing we discussed was my relationship with my husband. She asked if I would consider couple therapy. I said I wasn't ready for that and didn't even think I wanted it. We discussed how I felt when he laid that crap on me in November on the phone. She asked me to think about what needed to happen for me to consider couple therapy.
Honestly I just kept thinking as she talked this is about me not him. I said well I think I need to fix myself to actually like myself. I said I hate who I have become both physically due to my weight gain and I hate how I feel about life and my attitude/outlook. She asked about how we communicate. Uh we don't. He doesn't listen and I have trouble saying how I feel in a situation because he always twists it around and makes me feel like crap.
Honestly I just don't know if I care enough to do couples therapy. I think we've both checked out.
I went to a Dr here in the city this morning regarding my blood pressure. He said that one of the blood test results from my ER visit in January was a bit concerning regarding my kidney function. I said I wasn't told about that. He talked to me about a few yrs ago when my creatin level was high and I had to do urine collections for several days. He is a bit concerned that my high bp may have been developing for awhile and could be affecting my kidney function.
He sent me for some other blood tests. There is a BP monitor in the pharmacy in the hospital he wants me to take my bp for the next 7 to 10 days a few times a day and record it on a app. I have an appt to go back and see him on the 23rd. If the blood results aren't where he wants them I will be sent for a scan of my kidneys. If bp recording remain high I will need to go on medication. I was really upset I hope I haven't done damage to myself. I know I need to lose some weight. He weighted me and surprisingly with all the terrible eating habits I've developed these past 6 months I never gained any weight I think I actually lost 5 pounds.
Like I said a busy few days!
Oh I forgot to add while i was brushing my teeth on Monday I lost a filling yep it just keeps piling on ugh!
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