Wednesday, May 7, 2014

Our Special Needs Journey:Part 15 - Homecoming: Hospital Discharge & Other Updates

This post is overdue, as usual. Getting in a few moments to sit with my computer is a challenge these days, priority-wise. Bruce won't let me finish cleaning or folding laundry but he's okay with me typing provided there is a boob in his mouth at all times. :) (Love this kid)

If you've been following our family's story, you'd already know that my oldest daughter, Julia, has been in the hospital to treat her eating disorder and failure to thrive. We really missed having her at home - she's total sunshine and such a cheerful helper. (Although it is oddly quiet when my girls are not together - they are always screaming and fighting or screaming and playing.)

Everyone was excited to have her come home Friday afternoon!  After almost 2 weeks indoors in Intensive Stay Living Inpatient Care when we walked out to the car she was surprised to find the grass was green! Yes, it was May 2nd, but in Minnesota that is no guarantee that Spring has come and Summer is around the corner.  So when the sun finally emerged for the first time in weeks Julia was totally convinced it had come out just for her.

BTW - to those amazing friends & family that came to visit Julia at the hospital, made a meal, or helped with childcare - I can't thank you enough! 

[Bruce and I went to Julia's appointments that morning then brought her home. He so very much missed his sister and would not let her go - not even to come to his mama! In other news, this baby is now 15 months and in desperate need of a haircut!]

[This is just a small display of the insane amount of pictures she came home with - these are hanging in her hospital room. Everyone loved Julia and made pictures for her - the nurses, other patients, even one of the janitor dudes!]

I'm not thrilled with the information I was given upon discharge  - I don't feel totally equipped to handle Julia's weight restoration at home, as she refuses to eat and I'm unable to encourage her cooperation.  That said, we wanted her home with us. She gained 3 pounds in 12 days and also became more independent and got a better sense of portion sizes and the desperation of her situation. If nothing else, this might become our "carrot."  ("Please eat one more bite - we don't want to see you back in the hospital.").

An example of how thoughtful my daughter is (having autism does not mean they have no empathy, don't buy that stereotype): she has been texting to check in with her new friend there. She's 15 and allowed to use her phone when her parents visit. Julia said the girl cried a lot when she was first admitted but Julia prayed with her and hung out with her to cheer her up. Since we have been home she has prayed for this girl everyday - and the other patients she met there. She even has all their names memorized so she can pray for them by name.

It was not fantastic timing for Dean to get sick and be admitted to the hospital - a different one than Julia was in. Monday he got off the bus after preschool and promptly put himself in bed. By that evening his skin was boiling hot to the touch (we own like 5 thermometers but I can never seem to find one when I need it) and he was lethargic and not himself.

I was up with him most of the night.  Despite being sick and tired he was in too much pain to sleep. He picked up some kind of virus/stomach bug - Taylor was feeling sick too. Not terribly warm but tummy ache for sure. Dean had at least a dozen liquid stools in 24 hours - with blood and that icky "somethings-not-right" smell. It is times like this I wish he was potty trained...

This usually active, high-energy boy was laying totally still for hours, awake but without any entertainment. That's how you know he's sick! He kept waking up to scream "no, no, no" over and over. I couldn't console him or get him to snap out of his trance. Sadly, this happens often but I have no clue what it means. Is he in pain every time he does this? It's obvious he is today.

Tuesday evening I brought him up to Children's Hospital because he had refused to eat or drink since Monday morning but kept having bad pull-ups. He actually did well during the x-rays and ultrasound (proving he's too sick to argue) but we ended up needing nitrous gas to put in his IV.  I expected he'd get IVs for dehydration, I didn't plan on staying the night. Fantastic, I now have 2 children in 2 different hospitals plus 2 more at home that are sick. May not have been the best day to forget to eat.

Dan ended up bringing Bruce to the hospital several times over the next few days so I could nurse Bruce. I realized I am still breastfeeding a lot for having a 15 month old! Since Bruce was sick too (not as bad as Dean) keeping him hydrated was a challenge.

[I was flipping channels to distract Dean and keep myself awake. When Bones came on Dean said "stop here," and wouldn't let me change the channel! Atta boy!]

[Papa brought up his heavy blanket which helped TONS plus the nurse showed Dean how to move the bed - this cheered him up a great deal.]

Wednesday we got some blocks to borrow while in the hospital, he was far less dehydrated, and his fever - 103.6 when we arrived Tuesday - was down to 100.something! He was feeling much better and we had a great time playing with the toys and coloring. I spent the night in his bed with him and honestly really enjoyed snuggling with Dean one-on-one.  Knowing he would be okay made it possible to relax and be present in the moment.

We've been living in crisis-survival-mode for soooo long now (at the very least it began almost 2 years ago when I was about 5 weeks pregnant with Bruce - I have difficult pregnancies) that multi-tasking-stressed-out-overwhelmed-sleep-deprived-madness is my default setting. Having nothing to "work on" except playing with my son (and my iPhone) was a welcome change.

Sure, I had to make a zillion phone calls (cancel preschool, the bus, PCAs, therapies, other appointments, etc) and manage my household from the hospital, but I spent time just sitting. It may have been hospital food but not having to clean it up and do dishes transformed meals into a 4-star-dining experience!

[I've tried to teach him that in Dominoes you can match the color or number but he insisted instead upon stacking them up in numerical order. Zero dots, 1 dot, 2 dots, etc. until his wall was stacked 13 high. I love how his brain works!]
[He likes to instruct me how to color a picture - beginning with red at the top of the photo and going down the page in rainbow order. Yes, even if that means Oscar is purple and the sky is pink.]
[His rainbow octopus]

By the 3rd night I could handle it no more (mostly because I missed my meds for 3 days and the withdrawals are brutal - and it was uncomfortable being away from Bruce) and traded places with Dan. Dean was feeling better but still refusing to eat or drink and having bad poos. The doctor would not allow him to leave when he was at such a risk of becoming dehydrated again so quickly. The hospital said it was helpful he have a "dairy detox" anyhow, as giving it up was new and we were not used to eliminating a whole group of foods from his diet.

[Playing with Wiki Stix - because having him throw blocks across the room was getting frustrating.]

Dean was well enough to eat on Friday and was sent home after lunch - he was excited he got to keep the balloon!

So Dan has a union job, which means no exceptions to rules & no flexibility. In order to take time off so we could survive all this chaos (even 2 parents didn't seem like enough adults to manage all the childcare needed and hospital stays and other appointments) he has to get a hold of specific paperwork from Corporate and have the doctors complete it to use FMLA time. There are zero personal or sick days and his vacation request was denied (It's pretty standard to be denied in the summer or around the holidays but this denial was a bit surprising).  Without the proper paperwork filled in properly by the proper person and sent to the proper place he will lose his job.

Friday was the first of 2 zero dollar paychecks. Even with losing our home and not paying a mortgage we seem to be living paycheck-to-paycheck (the hospital parking fees alone are going to bankrupt us, LOL!) so unplanned financial losses hit us pretty hard. Of course both vans need the breaks replaced and my car decided to quit spitting out heat or AC. Raise your hand if you totally relate.
Since I've resolved to give God control and let Him take the wheel my anxiety/stress level is actually pretty tolerable. I'm slightly less overwhelmed this week and actually managed to score 7 hours of sleep last night! I bought Brucie a crib and sidecarred it to my bed. He fell asleep in it, without me in the room!