update on Isaiah
+ Reply to Thread
Page 1 of 3 123 LastLast
Results 1 to 10 of 30

Thread: update on Isaiah

  1. #1
    Posting Addict
    Join Date
    Dec 2005
    Location
    Southwestern PA
    Posts
    11,678

    Default 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?

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

  2. #2
    Posting Addict wishing4agirl's Avatar
    Join Date
    Jan 2008
    Location
    Washington
    Posts
    13,111

    Default

    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.

  3. #3
    Posting Addict
    Join Date
    Nov 2006
    Posts
    6,930

    Default

    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.

  4. #4
    Posting Addict
    Join Date
    Dec 2005
    Location
    Southwestern PA
    Posts
    11,678

    Default

    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).

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

  5. #5
    Posting Addict wishing4agirl's Avatar
    Join Date
    Jan 2008
    Location
    Washington
    Posts
    13,111

    Default

    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.

  6. #6
    Posting Addict
    Join Date
    Dec 2005
    Location
    Southwestern PA
    Posts
    11,678

    Default

    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.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

  7. #7
    Posting Addict wishing4agirl's Avatar
    Join Date
    Jan 2008
    Location
    Washington
    Posts
    13,111

    Default

    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.

  8. #8
    Super Poster Sweet Pea Twins's Avatar
    Join Date
    Sep 2009
    Posts
    925

    Default

    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.

    Melissa, mom to:
    Gabby (4/03), Bella (4/03), Deborah (8/04)


  9. #9
    Community Host sarahsunshine's Avatar
    Join Date
    Nov 2006
    Location
    Alberta, Canada
    Posts
    4,377

    Default

    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.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


  10. #10
    Posting Addict gardenbug's Avatar
    Join Date
    Mar 2007
    Location
    Elora, Ontario
    Posts
    9,509

    Default

    (Dh, Me, and Biodad)
    You mean biomom, right?
    Leo (3 1/2) with Malcolm the cat

+ Reply to Thread
Page 1 of 3 123 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
v -->

About Us | Contact Us | Privacy Policy | Sitemap | Terms & Conditions