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Post by LavenderLayoutLady on Jan 27, 2018 1:28:31 GMT
I'm sorry Spencer had so many complications during the procedure. Poor guy!
And how awesome that you met up with a pea!!
I'm keeping both you and Spencer in my thoughts and prayers.
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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 Jan 27, 2018 2:52:16 GMT
Oh my goodness, what a rollercoaster! Holding you and Spencer both in my heart.
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Post by scrapmaven on Jan 27, 2018 3:10:22 GMT
theshyone, thank you for visiting. I'll bet that made a big difference in canadianscrappergirl's week. Oh, you and Spencer have just been through way too much. How I wish I could make it all better for you. UGH! I'm glad you have a psych appt. Loving self care is vital right now.
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Post by mom on Jan 27, 2018 3:13:13 GMT
I am still praying for Spencer and you!
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Post by gar on Jan 28, 2018 11:59:01 GMT
Hoping you're right and that Spencer bounces back quickly after his procedure and I'm glad you have an appointment for yourself too. Thinking of you both.
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Post by jenjie on Jan 28, 2018 12:20:00 GMT
There is not one of us who is shocked 😳 by this. Your stress level has to be sky high. This. It’s normal for what you’re going through. Still scary as anything! Did they recommend follow up with GP? I don’t know how you feel about anti-anxiety meds, but did they suggest that? I never wanted to go on it but my gf explained it would help decluttee my thoughts. I was given low dose Xanax for every day and something else as-needed. It did help with the chest pain, racing heartbeat and racing thoughts so I could focus better and feel better.
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Post by destined2bmom on Jan 28, 2018 13:07:04 GMT
I understand how stressed you are with everything that has been happening to Spencer. 😢 I am so sorry that Spencer is still experiencing so many setbacks. 😢 Prayers continuing to be sent to you and your family.
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Post by donna on Jan 28, 2018 16:34:14 GMT
Prayers for you and for Spencer. Please take care of yourself. The chest pain may not have been anything serious this time, but your high blood pressure is definitely telling you to take care of your own health as well.
Hugs
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Post by canadianscrappergirl on Jan 30, 2018 3:07:56 GMT
UPDATE Hey everyone ugh I wish this was a post with just positive news and updates!
I think I had mentioned that Spencer has a UTI apparently the antibiotic he's on isn't the right one. The one he should be on is the one they think he's allergic to so they've started him on something else. It's quite a bad bug of course.
So yesterday while I was with Spencer I noticed a lot of blood in his drain tubing from his external ventricular drain. The nurse said they had to flush it because there was a clot in it but it seemed to work and the drain was functioning well.
Today I had decided to take a break and come to the hospital later as there was some things I needed to do.
As I'm out doing my thing I get a call from the hospital saying they need my verbal consent for an emergency surgery to once again replace the drain because it had blocked!
The Dr went thru the risks etc and what they had done prior to that to try and fix it and him going for a mapping MRI and a CT. I tell him I can be there in 15 mins as I'm in the area and he says I think by then he'll be in the OR, seriously WTF!
I drive like a bat out of hell and run to the elevators and get to his room and he's gone already to the OR. I run to the nurses station and literally have a mini melt down. They are trying to explain why I didn't get a heads up and I'm saying just get me to where he is so I can try and catch him to wish him luck.
Thankfully he was waiting in the waiting bay and I was able to see him. He could see I had been crying and was upset for me. The nurse who accompanied him down to the OR was asking me where I was. I said why does that matter and she said well you got here quickly. I said yeah no thanks to the unit for calling me minutes before he's set to go to the OR. I said I'm really pissed right now. She said you should talk to the charge nurse I said don't worry I will be when I get upstairs.
So the charge nurse comes to talk to me and has excuse after excuse. I said look I don't want to hear excuses and quit blaming the Drs for it. I said this is not my 1st rodeo with a blocked EVD. I know the protocol. You had to first do some flushes, you quit his feeds when the flushes didn't work, get a CT to see if it was compromising him and then get a mapping MRI so you know where to place the new drain. I said so where along the way did not any one from you to his nurse think hmm we better let Kathy know what's probsbly going to happen. This all didn't happen in an hour she said no they started having issues last night.
I said I know Spencer was probably wondering where I was and why no one was with him as he was wheeled down.
It was a lot of stress and panic for no reason.
He just got back to his room. The Dr who operated said it went well. Apparently he had a lot of clots and that was the culprit. His neurosurgeon was unable to do the surgery.
They took 2 blood culture on Friday night after his surgery. Apparently one started growing something they feel it's contaminated because its only in one and took a bit to grow. They are redoing it I pray it is because he got so terribly sick with that last blood infection.
I keep wondering how much more is he going to go thru. His oldest brother was so upset when I called him. We just keep hitting wall after wall. He keeps looking at me and in his eyes it looks like he's saying mom WTH are you all doing to me. I'm sure he's exhausted I know I am.
ETA When the porter brought him up to the room he said I'm so sorry you weren't here when I took Spencer down. I kept wondering where you were because you're always with him. Seriously a porter knew I should and would want to there ugh!!
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Post by scrapmaven on Jan 30, 2018 3:37:02 GMT
((((HUGS)))). Spencer and you have been through so much more than any two people should have to endure. I hope that Spencer is resting comfortably and that you will get a very good night's sleep. You need that rest no matter how upset you are.
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Post by ntsf on Jan 30, 2018 5:54:11 GMT
I think we all want to pick you and spencer up and hug you and rock you and tell you it will be better. but we don't know and we can only do the virtual hug.. but you have a big one from all of us around the world. I have been in too many hospitals myself--dh has had many surgeries over 35 yrs..... and it is just no fun. so super special hugs from me.
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Post by garagesaler on Jan 30, 2018 5:56:58 GMT
So sorry Spencer needed the surgery and no one contacted you sooner. Praying for Spencer to heal from the UTI and this surgery. So sorry so much keeps happening to him.
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Post by mom on Jan 30, 2018 8:45:39 GMT
Hugs, canadianscrappergirl You & Spencer are never far from my thoughts. Hopefully today will be the day that good things began to happen!
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Post by gar on Jan 30, 2018 8:52:13 GMT
((hugs)) Mum.
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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 Jan 30, 2018 9:10:18 GMT
Hang in there. Prayers for you both.
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Post by LavenderLayoutLady on Jan 30, 2018 11:17:33 GMT
(((Hugs)))
You & Spencer need a better day.
My thoughts and prayers are with you.
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teddyw
Drama Llama
Posts: 6,850
Jun 29, 2014 1:56:04 GMT
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Post by teddyw on Jan 30, 2018 11:35:05 GMT
Hugs you two have been through so much. Prayers he starts to get better.
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Jan 30, 2018 16:09:45 GMT
I’m so sorry Spencer and you are having such a difficult time of it still. It can’t be easy keeping all the bells you are juggling up in the air.
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Post by femalebusiness on Jan 30, 2018 17:11:38 GMT
I was so hoping Spencer would be heading in the right direction by now. I am so sorry you and he are still struggling. It is just not fair. You both are in my thoughts.
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Post by mikklynn on Jan 30, 2018 19:46:17 GMT
Giant {{{HUGS}}} mama.
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Post by kkrenn on Jan 30, 2018 19:54:18 GMT
I hope today is better than the day before and I'm praying.
Hugs
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wellway
Prolific Pea
Posts: 8,769
Jun 25, 2014 20:50:09 GMT
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Post by wellway on Jan 30, 2018 19:59:22 GMT
((Hugs)) May the better days be here asap
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oh yvonne
Prolific Pea
Posts: 8,003
Jun 26, 2014 0:45:23 GMT
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Post by oh yvonne on Jan 30, 2018 22:17:37 GMT
oh, I'm so sad to read the latest update, I'm so sorry momma. Still thinking of you and sending all my good thoughts and prayers.
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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 Jan 30, 2018 22:24:32 GMT
Hoping that February brings a much better turn of events for you and Dear Spencer. You are both in my prayers every day. Hugs....
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Post by patin on Jan 31, 2018 7:03:13 GMT
Your last update made me cry. Praying harder!
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Post by idahopea on Feb 4, 2018 1:41:39 GMT
How are you and Spencer doing? Thinking of you and hoping you have both had a couple of better days.
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Post by donna on Feb 4, 2018 1:51:16 GMT
I was getting stressed for you just reading your last post. I hope things start moving in a positive direction now. Hugs
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Post by kiwigirl on Feb 5, 2018 9:26:21 GMT
How are you doing now canadianscrappergirl? I can't believe what you and Spencer have been through, it's so much I have no idea how you are coping. I was just thinking about Spencer and hope everything is ok.
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Post by garagesaler on Feb 5, 2018 23:30:26 GMT
Thinking about you and Spencer and praying for you both.
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Post by canadianscrappergirl on Feb 6, 2018 0:16:09 GMT
UPDATE Hi everyone!
The results from Spencer's blood work showed that he has another damned blood infection honestly the crap just never ends!
They figure it's a result of the UTI. This will definitely delay the shunt being put back in they said. It could be March before it is able to be put in.
They adjusted his drain from -6 to -4 on Friday so far it seems to be manageable.
Today the speech therapist checked in on Spencer and started talking about a PEG tube like I knew this was being considered I said uh no I had no idea this was being considered.
I've done some research on it and I'm not willing to put him thru that. I am close to another family who was on the unit and she has had nothing but problems with it. I kinda feel it was an easy out for the team and they quit even trying to see if that person could eat or swallow once it was put in.
I get the feeling they just don't want to figure out why he can't eat or chew or bring his top and bottom jaw together. I feel it was their fuck up that caused all of this. He had no issues before August 10th. I refuse to bring him home and have to deal with a feeding tube. As it is now I'm feeling overwhelmed with all of this and I have absolutely no help and I just don't think I can do it. Does that make me an awful person?
The risk of infection is worrisome. He has a ton of scar tissue in his abdomen and it sounds like there is quite a bit of daily care with it.
I am so tired of having to make all these decisions it's so stressful.
Spencer had two separate visits from dogs this week. One was a friend of a nurse who sits her dog. She brought in her dog who is her service dog and the other was the nurse and her dog. It was so kind and sweet of the unit to bring in the dogs. Spencer was absolutely thrilled and of course I cried lol. It really brightened his day!
I had my psychiatric evaluation appointment today. It was a combination of lots of questionnaires, an in-depth interview and then a plan.
They want me to go see a GP and make sure my BP is ok. I don't have a family doctor so that may take a bit to figure out.
They want me to try taking a antidepressant called Wellbutrin.
They want to see me weekly and start therapy working on my interpersonal issues and they also feel all the stress of the issues with Spencer needs to be treated I think they are thinking I have some PTS issues.
They gave me a few short term goals like trying to take a walk within the hospital or take the stairs. To start going to bed by 11 and to quit eating by 9 and to eat breakfast.
I think I really need this therapy and I am so grateful that emergency doctor referred me!
Thank you all so much for your continued prayers and support!
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