A New House & Horrible Food

We got home Thursday evening around 7. It was great to be home, but a little scary and overwhelming too, knowing now that we were on our own with feeding tubes, flushing lines, and mixing formula. That's pretty funny actually. I've had four babies of my own and there has never been baby formula in my fridge until now when I have four teenagers!

We were pretty exhausted and just lounged most of yesterday. Jerry's pump alarm goes off every four hours to let us know he needs more formula and so it really is like having a baby again with getting up in the middle of the night. After almost two days home now though, I think we're getting into the swing of things a little. Later today, we are going to test out Jerry's backpack the hospital sent home with us and try and get out of the house for a little bit...get some sunshine...even if it is in the form of running errands.

When we got home from the hospital Jerry walked in and said, "Did we get new stuff? Our house looks so different." I guess if we thought two weeks in the hospital felt like a long time, it was an eternity to Jerry! He walked around touching stuff and asking, "Is this new?" It was funny. We thought we'd have a difficult time getting him back to his sleeping routine because of how wonky his sleep habits were in the hospital, but by 8:30 Thursday night, he was asking to go to bed. Amazing actually how smooth a transition back home it has been.

The worst part has been the rest of us having to eat while Jerry still cannot. In the hospital, we left his room to go and eat so he wouldn't see us. At home, that's just not possible. The trick is we have to tell him how terrible the food is we are eating while we eat it. Friends ordered us pizza last night and we had to make faces and pretend it was disgusting when he asked us about it. He is still limited to clear liquids and so we have stocked up on broth and icees and popsicles. It's hard to get creative with those and make them taste different or better than the last time he ate them. Of course, every channel we turn to on TV has food and restaurant commercials!

The best part about being home is sleeping in our own beds, showering in our own showers, and Jerry finally getting to take the baths he loves so much. Last night he worked at taking the bandages off where his PICC line was. He had to keep them on for 24 hours. He worked at them in the tub until he finally got them off and then said, "Oh my gosh mom! There's a hole in my arm!" That freaked him out just a little and he wouldn't use his arm for the rest of the night, but he's back to normal with it this morning.

With time to reflect since I have been home, there has been much to be thankful for...even over the last few weeks and all of our hospital drama. Trying to keep it all in perspective, I have made a list.
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• Obviously, we are thankful for catching the SMA Syndrome before any other major organ damage could result. It could have been worse.
• The nurses and doctors and overall experience at St. Joseph's was incredible. They were all so hospitable and friendly and genuinely caring for all of us while we were there.
• The Child Life team, volunteers, and the art therapist who helped Jerry pass the time with games, crafts, and organized events with other kids in the hospital.
• Jerry's ABA Becca coming four of the days he was there to play and work with him. He loves her.
• John being able to work from home or the hospital so he could be with us.
• Michaela keeping on top of the laundry and cooking for her brothers at home.
• Ben taking care of the dog and house chores for everyone.
• Jonathan being the errand runner and grocery shopper for his brother and sister while we were at the hospital.
• A Joffrey's coffee shop in the hospital.
• Decent cafeteria food at decent prices since we really had no other option but to eat there most days. Not to mention the family nutrition room stocked with snacks and drinks and free to the family members of inpatient kids.
• The friends and family who brought meals to the other kids here at home.
• For the last few years, I have watched neighbor kids during the summer while their parents worked. This year, I told them early on that I would not be doing it again this summer. God knew we would be in the hospital for two weeks. That would have left those parents in a real bind.
• We decided not to pay for summer camp for Jerry this summer because we were unsure of his behavior and figured we all needed a break this summer. Good thing. He would have missed four weeks of it at least.
• John's car breaking down while we were in the hospital. Sounds like something to not be thankful for, but had it broken down any other time, it would have been a hardship because we need both cars. But I wasn't going anywhere in the hospital so John could use mine.
• My friend Kim letting me use her car the one morning that I wanted to go to Bible study and escape the hospital halls for a while.
• All of the friends and family who came to visit Jerry, pass time for us, and who brought him gifts so he had things to do as he recovered.
• Kim's son was supposed to be in camp Jerry's first week in the hospital, but the camp was canceled for a lack of kids signed up. That was God. Kim was then available to come to the hospital to help out and keep us company. And Sam played with Jerry.
• My other girlfriend Laurie got laid off in April and she decided to take the summer off before returning to work. I am selfishly claiming that was for my benefit as well. She kept me company, along with her daughter Angie, took me out for sunshine in the hospital courtyard, and helped feed me!
• My sister Wendy who stayed with Jerry one Sunday morning so John and I could go home at the same time to see the other kids, get things done, nap.
• Our friend Angie getting us a bed rail for Jerry because he is in a loft bed and we worry about him falling out and pulling his feeding tube out of place.
• Still being able to volunteer at VBC in Zephyrhills with the other kids while John stayed with Jerry at the hospital. It was a good distraction, time I got to spend with Micky, Ben, and Jo, and we love and look forward to VBC week every year!
• Micky and Jerry's VBC leader Angela making sure Jerry got the crafts given out each night at VBC so he still felt like a part of the fun.
• My friend Suze bringing necessities like fitting underwear and comfy PJ shorts for Jerry, along with soft socks and games to occupy his time. Her son Kai is in remission from cancer and so she knows full well the realities of hospital life. She comforted us the way God comforted her through her time during Kai's illness and it blessed us greatly.
• The hospital cable provider having the Speed channel, which Jerry loves but hasn't been able to watch since our provider dropped the channel two years ago.
• Though they would have rather had us all home together, Ben, Michaela, and Jonathan got a much-needed respite from their little brother.
• Jerry has been so difficult lately that compassion has definitely been lacking on our behalf with him. Seeing him so sick and needing us so much definitely refueled our compassion towards him. Priceless were the nights he would scoot over in his hospital bed and ask me to crawl in next to him to watch TV or scratch his back.
• The special needs family retreat we were supposed to go on the first week in August, but had to cancel, rolling all of our monies for the trip over to next year so we can still go. 
• Having time, albeit in a hospital room, to read, paint, pray, and slow down from everyday life for just a bit. Again, it was certainly a perspective changer.
• And here's the biggie. As most of you know, Jerry has been very challenging behaviorally over the last six months. As of June 30th, he lost his Medicaid and SSI because our oldest son turned 18 and so we no longer met the income restrictions to qualify for that coverage for Jerry. We need his Medicaid for all of his therapies, services, and medications. We had been on the Med Waiver waiting list for six years. We filed for an emergency review to be bumped up on the list and considered for crisis coverage. They reviewed our case in Tallahassee because Jerry was considered a danger to himself and others and, thanks to his ABA's and the school, we had ample documentation to prove that. And here is the praise. HE WAS APPROVED FOR THE MED WAIVER (Medicaid that is not based on income and that he can never lose) AND IT TOOK EFFECT ON JULY 1ST! We entered the hospital on July 8th and were there for 13 days. I cannot even imagine the devastation of having had to be responsible for the bills incurred from the stay, the tests, the medications, doctors, procedures, etc... But God knew. And maybe, just maybe...everything we had to go through with Jerry in the last six months or so was for the sole purpose of being able to get him the Med Waiver so he would have coverage for this hospital stay.

My point? God is good...all the time. All the time, God is good. I am sure I will think of more things that were blessings and we can be grateful for as the time passes, but that's my list for now.

And we do still need prayer. Jerry is still not out of the woods. We have to work towards getting this feeding tube out, prayerfully before school starts. His stomach and intestines need to learn to handle solid food again and he needs to gain weight. So keep praying. Just because we are home doesn't mean we still don't need it! Thank you again to everyone who has encouraged, supported, called, reached out to, fed, and loved on our family over the last few weeks. You are blessings beyond words.