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View Full Version : Drew is back in the hospital


WorkinMom
08-07-2007, 09:04 PM
Drew was delivered back to the hospital Monday morning after a 9am call from the neuro requesting him back to run some tests. (guess he had the night to think that maybe things weren't as they should be)

He had to go via ambulance since there was no sitting him up without the headache, dizziness and vomitting. I was not about to trigger the headache again for nothing/anything. (it's horrible)

Soon as we get there we are treated like a heartattack patient - immediate tests - first and foremost was a brainscan to rule out hydrocepelus (sp?) :eek: I was like WHAT? Total panic. Took him for the brainscan then back to the room he was put on a caffeine IV and a diuretic. The neuro didn't find it serious enough to contact back yesterday evening so I felt somewhat relieved yet irritated with him at the same time. (But I knew he had had 10 surgeries that day so I "kinda" understood) As suspected with the no return visit - brainscan was clear. Neuro still wants him flat and increased liquids via IV - I don't see where that is going to help as he has been flat for the past 9 days less the trip home.

The pump site was swollen yesterday when we arrived at the hospital. I know it wasn't like that Sunday night when he was vomitting in the shower. And it is still swollen today (Tuesday). Very fluid like on and around the actual pump. The back incision looks fine as does the incison atop the pump.
Neuro says 3 more days before we will attempt to sit him upright. I just don't feel good about this wait and see stuff.

Everyone that I have confered with that has had the pump implanted has not had this. BUT their children are alot more involved and not as heafty as Drew (125lbs) and all (less 1 and Cindy) nonverbal or not "trustworthy".

My thoughts -too much baclofen (150 micrograms) to begin. I seen eyebrows rise by pump rep and neuro's nurse practioner and surprise from PT as well as surprise from local friends with experience. But neuro said - no. Not the problem. (let me add here he does no longer specialize in pediatric neurosurgery due to major conflict in our local children's hospital)

Seond thought - no BM for the last 9 days. Normally every 3-4 days but with anesthesia and Tylenol3's hence the 9 days. took this into my own hands and requested enemas to the nurse after neuro's "hours" and was approved and Drew got some relief. I'm wondering if this was the cause of the dizziness and vomitting/nausea? Possible right?

Any insight? Advice?

Can you tell I'm stressed? DH takes his turn tonight after I spent last night with the caffeine IV :p

Jennifer

lacyndarella
08-07-2007, 09:41 PM
I have no advice...just (((()))) and prayers!

AnnMarie
08-07-2007, 10:06 PM
Sounds like the baclofen isn't agreeing with him....hope he feels better soon, and tell them about the BM ---that may just add to his problems. Hang in there--AnnMarie

kathleenandjoe
08-07-2007, 10:41 PM
I still think spinal headache. Yuck. I am sorry to hear this. Prayers going up.

alizesmom
08-07-2007, 11:37 PM
Sounds like a spinal headache to me, too. Could be he is leaking fluid from the place where the pump is inserted and that may cause the swelling along the pump site as the fluid follows the path of least resistance. I'm no expert on baclofen pumps but it makes sense. Karen

RathyKay
08-08-2007, 12:04 AM
(((Hugs))) and prayers. I'm so sorry to hear things aren't going well. I can see BM backup causing problems. Tom's teachers have always commented that "he was out of it today" when he's been backed up. It's waste material that's supposed to be eliminated from the body, and not allowed to recirculate in the bloodstream causing trouble. Oh, and vomiting and a backed up system also go together. I don't think BM is the sole problem, but I don't think you think that either.

Keep us posted. I hope you are all able to get some rest tonight.

langansmom
08-08-2007, 11:33 AM
(((((hugs)))))

I don't have any advice but wanted you to know we're thinking of you guys and hoping that you get some answers soon.

Little JT
08-08-2007, 11:36 AM
I'm so sorry Drew is in the hospital. I don't have any real experience or advice with what you're going through, but I sure am praying that he feels better soon and you can get home and get some rest!

Hugs and prayers coming your way,

Amy

lkelley
08-09-2007, 09:31 PM
jennifer-
im wondering what kinds of tests they have done on his pump because when they thought chelsea was having a problem they took her to radiology and tried to draw fluid from the pump and when they didnt get any, they assumed it was obstructed and scheduled her for surgery, but the next day before her surgery they took her back to radiology just to make sure it was obstructed and they were able to flush out the obstruction without surgery.
these people sound like quacks IMO look at your card that all baclofen pump owners have and call their 1800 number nd ask them for advice see what they have to say,
if all else fails take her somewhere else

RathyKay
08-09-2007, 09:44 PM
What is the latest on Drew? I hope and pray he is doing noticeably better. Leah's advice sounds right on the money.

WorkinMom
08-10-2007, 07:04 AM
Well he is still in the hospital flat on his back with IV fluids. The neuro said we will "start" sitting him up Saturday. That will be 12 days of laying flat. I know it doesn't sound like a long time but let me tell you - IT IS! :eek:

He is in no pain as long as he is laying. I'm anxious to see what happens tomorrow when he gets to sit up. Surely it will be a gradual process so who knows when we'll make it home.

I'm calling school today (monday is the opening day) and let them know Drew will probably not be there. This really sucks.

I don't know what the plan is if the headache and dizziness and nausea returns. I know he is so tired of being in the hospital. I am going to see if its possible to come home with a visiting nurse if the neuro wants to just continue with the laying and fluids. Actually if he continues to get dizzy and all after sitting up and I am going to ask for a second opinion from someone. Don't know who but .....

Things are always so difficult for my lil man. It's so unfair.

Jennifer

Tigger 76
08-10-2007, 03:30 PM
Jennifer,

I am so sorry things are not going well. Please check your pm box

Guitarmom
08-10-2007, 11:15 PM
YES< I would go for the second opinion..... I am NOT liking that you are getting so many raised Eyebrows with the dosing....I have no experience with Baclofin, but something is NOT right when he is having this much problem!! 12 days on his back and still so much pain and just LAYING on his back with IV and all that...>SOMETHING is not right!

I am so sorry!

Ginny