update on Isaiah

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Joined: 12/01/05
Posts: 1000
update on Isaiah

There's been a lot going on, so I thought I'd update. He has been in the PICU for 3 weeks today, and I expect he will be in for another 1 1/2 weeks plus 2 weeks inpatient rehab after that before he can go home.

His dystonia had gotten very bad, to the point it was affecting his airway, and we had taken him to the local ER. They transported us by ambulance to Children's. At Children's they put him on a Versed (strong sedative) drip to try and control the dystonia. He was diagnosed with Status Dystonicus (a rare condition affecting people with dystonia) and put in the PICU. About a week in, he was up to 0.6/kg/hour on the Versed, which I later found out is the equivalent of a 10 mg tablet per hour of Ativan! Something drastic needed to be done. His neurologist and neurosurgeon finally agreed to trial a Baclofen pump. Baclofen is a medication that works in the spinal fluid and quiets nerve impulses to the muscles. They surgically inserted a catheter into his spine and ran it to a port in his side. He gets a continuous pump of the medication. They are weaning him off the Versed as they increase the Baclofen. The process takes a long time because of the high doses he was on. So far, it's working great.

He did still have trouble with swallowing, even with the Baclofen at a good level, so the ENT doctors injected Botox into a muscle at the top of his throat yesterday to help relax it so that it's not pooling saliva in the back of his throat. It will take effect in about a week, then speech therapists can try to re-teach him how to swallow. His bodily muscles are all weak from being in spasm for so long, so he will also need intensive PT and OT to help him re-learn everything from sitting up and holding up his head to standing and walking and using his arms and hands.

Has any of you ever had to deal with long-term stays in the ICU? We're finding it increasingly challenging to be able to stay with him, especially when we have 4 kiddos at home, and at least one of us needs to work to keep food on the table. Any suggestions or helpful hints?

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Well we weren't in the ICU long term, but we were in the hospital for about 2 - 2 1/2 months when Eli was a baby. I left VERY seldom because the one and only time I went home I was so stressed (Dakota was undiagnosed with autism at the time). We relied on my parents and a few others to babysit Dakota (he was 14-17 months at the time). My DH ended up getting his days off to be set days. My church brought food for us for dinners. My mom tried to help my hubby with the laundry and do the basic maintance stuff like dishes and things. Honestly we only made it and can only make it now with help. There is no way we would get by without it. The other thing that helps is I'm EXTREMELY organized and pretty much have lists for EVERYTHING (meals, directions on washing CD's, I make grocery lists for him, etc.). I know it sounds odd but I am always preparing myself just in case we have a stay however short or long of a stay. DH only gets 5 days of sick leave a year. He does get vacation too, but we have to use it sparingly. Basically he ends up acting like a single parent while I'm gone. If I was in the situation now I would trade DH on his days off and go home (I'm not so stressed now) and do the basic stuff I do like laundry and get things so he could function for another week if needed. But I would need my church, family and friends to help with the childcare and getting dinners for us.

I actually was wondering how you all were doing. I'm glad he's in a safe place and doing what they can for him. This brain stuff is scary. It's honestly scarier to me than the heart is. You guys continue to be in our prayers.

Joined: 11/28/06
Posts: 848

Oh, I'm so sorry to hear he is still in the ICU! I will continue to pray for Isaiah and your family.

We've never had an extended hospital stay of any sort so I don't have a lot of advice to offer there. I hope you have family/friends nearby that are willing to help out. If not, maybe speak with a hospital social worker to see if there are any local agencies that help with this sort of thing.

Joined: 12/01/05
Posts: 1000

Thanks, Ladies. My MIL is here for a week and a half, and that's been really helpful. These have been a bad few months for us, and this past week has been particularly difficult. We don't have any family living close by, but we have friends and church community. They provide us with occasional meals, and a friend of mine made Easter baskets for the kids. Norm has had to take some time off work, and he's at the hospital taking over for me for a few days so I can get some rest and recover while his mom takes care of the other kids. I will probably go back Monday and be stuck at the hospital full-time for the rest of the week. I've learned how to "check myself out" for awhile when I'm feeling overwhelmed or tired or ill. I'm trying to make sure to give myself time and take care of myself so that I don't get deathly sick like I did last year after Isaiah's hospitalization (had MRSA pneumonia and was very sick for a couple of months).

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Thank God for IL's. Take any help you can get. If I was closer I'd definitely help. I know when we were in the hospital for that long, I didn't stop until it was over. But that is just how I am. Unfortunately then I crash for a couple of weeks while I recover from the exhaustion. Are Thomas and Cherish in school? Do you have family that even though they aren't super close it would be driveable to take them to their house after this hospitalization is over? Obviously if they are in school that can't happen. But that is what we are going to do with Faith. It's easier to get a babysitter for two children than four. Especially since you know it's more than likely going to be at least 1 1/2 more weeks in hospital. Just an idea.

Joined: 12/01/05
Posts: 1000

Thomas is in kindergarten, and Cherish is in pre-K. We do have friends who will take the kids off our hands for awhile if needed, so that's good. We don't have any family closer than a 4 1/2 hour drive.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Yeah unfortunately that doesn't work. Glad you have at least a little help. 4 1/2 hours is a long way. I'd do it though if they weren't in school, but obviously that isn't an option.

Sweet Pea Twins's picture
Joined: 09/08/09
Posts: 922

The longest hospital stay we've ever had to deal with was 7 days... I never left the hospital once that whole time - DH brought me clothes and stuff when I needed them. So I can only imagine how hard it is to be there for that long.

Hang in there - I'm glad that you are seeing some progress and that you are trying to take care of yourself. Take any help that's offered and don't feel guilty - that's the only advice I have.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

When Skyler was in the hospital basically for all of December, it was a godsend to have 3 people there (Dh, Me, and Biodad). Honestly, I think the fact that it is 50/50 custody was a godsend because then there was no fight over who had to be there when, and they just split every other day for the entire time. I was an added bonus since I took time off work, and so I would be there most of every other day, but was with the other kids in the evenings and weekends. Both DH and I were lucky because we can take paid time off work for medical leave (stress) for up to 3 months, and our doctors were very willing to say that a kid going through heart surgery and hospital stays is stressful and write a doctor’s note for it. Is that a possibility for you?

So, what I would recommend, is that you really need to take care of yourself and your other kids. You need to find someone who can help you whether it’s church, community, neighbours, friends or family. Could either of yours or DH’s parents come stay for a couple weeks to help out? Can you get help through the hospital social worker? What about through other children’s aid organizations? Is there anyone who could donate their time simply by making some frozen home-cooked meals for DH to heat up quickly? I know it’s tough to organize while you are with Isaiah. I would definitely ask the hospital social worker for help. They were right there for us and surprised by how little we actually needed, but we were fortunate to have family come out to help since our hospital stay was mostly planned.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

(Dh, Me, and Biodad)

You mean biomom, right?

Joined: 05/05/04
Posts: 435

Oh man.

In my mom group sometimes we organize meals for new babies (and they organized some for me after Tom's surgery). There are two free sites now - send them a meal or something like that and meal train. Maybe you can get your local friends/church family to do that for you? As for the rest of it, do you have a friend who is a SAHM and could watch the younger kids during the day?

Joined: 12/01/05
Posts: 1000

The kids go to daycare before and after school. Cherish doesn't get bused, though, so she doesn't get to go to school unless we can take her. We have folks at church organizing meals and hospital snacks for us.

BTW, Isaiah was supposed to have surgery today to implant his pump, but it was put on hold because he developed pneumonia.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Wow you guys just cannot catch a break. More prayers coming.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

**** HUGE HUGS ****

I wish I lived nearby so I could help.

Joined: 05/05/04
Posts: 435

(((hugs)))

Is there anyone in her class you can ask to bring her? I think that Sam had some carpooling families when she was in preschool. There aren't any this year in Tom's class but I know that we could pick someone up and bring them to school with Tom if they could ride in Sam's booster (or in theory I could break my own rule and put Tom in it for a short ride). So I guess your best bet would be a family with a young kid who's a little older and already in grade school.

Joined: 12/01/05
Posts: 1000

"NatalieL" wrote:

(((hugs)))

Is there anyone in her class you can ask to bring her? I think that Sam had some carpooling families when she was in preschool. There aren't any this year in Tom's class but I know that we could pick someone up and bring them to school with Tom if they could ride in Sam's booster (or in theory I could break my own rule and put Tom in it for a short ride). So I guess your best bet would be a family with a young kid who's a little older and already in grade school.

I didn't even think of that. I just got a contact list from her school. I should see if anyone lives close.

Joined: 05/05/04
Posts: 435

That's why we are here! When you're in the thick of it it's really hard to come up with ideas because you're so over-the-top burned out. (((hugs)))

To help out a family going through what you are going through, we'd be willing to do a short detour once or twice a week, so you might be able to get the Joneses to help on Mondays, the Smiths on Tuesdays, etc. Smile

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"NatalieL" wrote:

That's why we are here! When you're in the thick of it it's really hard to come up with ideas because you're so over-the-top burned out. (((hugs)))

To help out a family going through what you are going through, we'd be willing to do a short detour once or twice a week, so you might be able to get the Joneses to help on Mondays, the Smiths on Tuesdays, etc. Smile

What an awesome idea!! I know if I was asked by a parent in that situation I'd volunteer every day you needed.

Joined: 12/01/05
Posts: 1000

DH talked to our next door neighbor, and she is going to transport Cherish every morning and afternoon for the next week and a half.

As for Isaiah, he has been in the PICU for a month yesterday. His pneumonia (aspiration) is clearing up, but they want to give him a trach to keep him from getting it again. This would delay the pump implant for at least another week. We have a swallow study tomorrow (Friday), and if he is swallowing better, he may not need the trach, so we are praying that will be the case. Otherwise, we are looking at another 2 weeks, at least, in the PICU.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

(((Hugs))) I'll be praying the swallow study shows improvement so he won't need the trach. Thanks for keeping us posted on what's going on. I know it's not easy when you are in the hospital.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Best of luck on the swallow test today. I hope he has improved significantly. Glad the pneumonia is clearing up. PLEASE get healthy!!! We want you home!

Hugs to everyone.

Joined: 12/01/05
Posts: 1000

He failed the swallow study and will be getting a trach.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"2sonsplus1" wrote:

He failed the swallow study and will be getting a trach.

HUGE :bigarmhug: I'm so sorry. Prayers going out for you all. Do you know when it's happening? I have a friend IRL who has a daughter with a trach. I think she has some support group contacts or something for parents with kids with trach's. I could ask her for you if you'd like.

Joined: 12/01/05
Posts: 1000

Monday or Tuesday. Don't know yet. We will probably know tomorrow, but we may not know until Monday. It's not the end of the world. Just adds another week until he will get to go home. It will help him breathe more comfortably and help keep him from getting pneumonia again.

Joined: 11/28/06
Posts: 848

Poor baby. Please know that we are praying for him, your family, and the doctors/nurses who are treating him.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Oh Isaiah! Sorry he has to go through this still. We cen only keep looking at the positives and how they will benefit him in the long run!

Big hugs to everyone.

Joined: 05/05/04
Posts: 435

My aunt got a trach as part of her recovery from a bypass & valve replacement. It has sped up her healing tremendously - she was not getting enough air and now she is. I'm sure that it sucks (she's actually in York, PA, so depending on where you are not necessarily super far). I think it may have saved her life though because she wasn't really getting better and had gone back on the vent twice.

I'm writing her a letter each day. I'm not sure how long she'll have the trach but I told her I knit her awesome scarves if she wanted some to cover it up or anything. She is still in the ICU for now, so I doubt she really cares Smile but I bet that you could come up with cool things for him to wear if he has to come home with it. I'll try to brainstorm. I know Tommy wants a green fuzzy scarf because Sam wears fuzzy scarves sometimes. I'm not really convinced that it'd be masculine enough for any boy over say, 4, to enjoy though.

Joined: 05/05/04
Posts: 435

Unfortunately I didn't find much in all of my googling. There are very pretty scarves, applique necklaces, etc. for ladies. For men you're basically stuck with bandannas.

http://www.stomacoversandtrachbands.com/Bandannas---Themes.html

I'm thinking at age 7 he's probably past the point where it's cool to try to dress up like a cowboy. Then again, depending on how long it's in, his friends may never see it. Or you could just talk to the class when he goes back, explain what's going on, how amazing he is to overcome all of this, and say he's wearing a bandanna to keep lint and stuff out of it. Do you sew? They look easy to make.

Joined: 12/01/05
Posts: 1000

Thanks. He got his trach on Wednesday, and he's doing fairly well. Still needs to learn how to cough through it without throwing up. The doctor seems to think that will happen with time. He will not be going back to school this school year. He will be going from here to rehab. When next school year comes around, if he still has the trach, I will ask him if he wants a bandanna to cover it up.

He is getting schooling in the hospital, and the rehab center has its own teacher who will be working with him.

Joined: 05/05/04
Posts: 435

that's great that they're continuing his education so he doesn't fall behind!! It's too bad that all this happened but at least they've got that covered.

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