I’m sorry for those of you who’ve waited so long for an update. Again, I let myself get so wrapped up the demands of mommy and nursing duties that I would pull out my computer in spare moments and just stare at it, too exhausted to type. Things are getting calmer finally so I’m devoting a piece of naptime to a quick blog entry.
When I last posted, Patrick was feeling like this:
We’d just found a way to stop him from itching, but he was still needing pretty high doses of pain medicine and was really out of it. He was, at least, though, trying to sit up and play as often as he could. Attempts at walking hadn’t gone very far.
Well, the next day his pain was a bit better and we decided to try two big things: getting dressed, and going for a walk.
Thankfully, he had a great nurse who listened to how to motivate him. So first, we made him have a bath and then offered to let him wear his Chicago Blackhawks sweater and a pair of “daddy shorts”.
Second, I told her that Patrick was most likely to walk with a wagon. So – she stashed one of the very most comfortable wagons for him. It was took about half an hour and lots of resting for him to walk 3 feet with the wagon. And then, as a reward, we put padded the wagon and let him play in it. (He looked a lot more steady that way, anyway).
He was sold and Patrick from then on tried to spend as much of his awake time as possible in the wagon. This was good as sometimes getting in and out was a bit painful. . . But with it only took one demonstration to convince him just how comfy it could be to lay back in a pile of pillows in the wagon to rest instead of getting in and out.
He made some other big strides, too. For one thing, his intestines finally woke up and he started pooping. Not just a little like he had been doing, but a lot like you’d expect from a kid with Short Gut Syndrome. I almost woke the entire pod when I found his first truly dirty diaper.
Once that happened, his doctor let us switch to g-tube downdrain and remove the tube from his nose. Patrick knew how to make it happen. He took the tape off his nose just as his surgeon came into the room and the doctor gave the ok to just leave it out.
We kept working on walking, too. In the surgical unit at our hospital they have fish on the floor every few feet. A few times a day, we’d leave the room and see how many fish he could walk on before he got tired. First it was to the second nurse’s desk. Then to the doors exiting the unit. And finally, one day he decided he’d like to go see spiderman. It took an hour to make the walk to spiderman and back, but it was well worth the effort.
We alternated walking with wagon rides. Besides spiderman, Patrick’s favorite destination was the patio. On the street below the patio is a trax train stop and several bus stops. So we’d watch and cheer for trains and busses and just enjoy being outside.
Patrick’s a little bit spoiled in the hospital. Not only do the nurses give him his way time and again, but Child Life takes very good care of him. During one visit from Child Life, Patrick sat up suddenly and then collapsed in pain. Seeing that he needed to rest a bit more, Megan from Child Life went and got permission for Patrick to use the Vecta machine for the weekend. This 5 foot tall machine is a combination of colored lights, bubbled, fiber optics, a projector and a button pad that lets you control the machine. Patrick loved this toy and it worked well to let him rest when he needed it.
Slowly, Patrick got feeling better and better. He had more interest in toys. He ate chicken soup and kept it down. He put himself to sleep in bed when he was tired. His fevers finally stopped, his blood cultures stayed negative and they stopped the antibiotics.
Then we started making plans to go home. They tried switching him to an oral pain medicine. However, the first one prescribed was a bit much and he fairly quickly threw it up and got really shaky.
That night, they switched him to lortab and he did much better with that. By the next morning, we weren’t using IV pain medicines anymore.
Too bad he also didn’t sleep hardly at all that night. Every time he fell asleep, he’d wake up gagging. So, naturally, he decided not to sleep. I ended up having to send him out to the nurse’s desk to play so that I could get some sleep.
The next morning, I was devastated. It seemed that the surgery had only made him throw up more easily and I felt like everything was out of control. I wanted to go home, but I didn’t know if I could handle that much need for care at home.
Patrick’s surgeon came by and told me that on paper Patrick met all the criteria for discharge and could go home whenever I thought he was ready. But he also told me that between the difficulty of pain control and the frequent nausea and vomiting and difficulty sleeping that he also met enough criteria to stay. I could stay as long as I felt I needed help.
Thank goodness for a good husband who pointed out that we’d all do better at home. And thank goodness for a good friend and mom of another short gut child who helped me muster up the courage to try it at home.
After lunch, I asked for him to be discharged. They worked quick and by 6, we were on our way home.
Patrick was happy to be home but very tired and very sore. He tried playing with his toybox, but ended up putting his toys on the floor and laying down to play. Daddy held him and tried letting him have a drink of water. Patrick immediately threw up all over him. I wondered what I’d gotten us into.
But, that night we gave him his pain meds and put him in bed and he slept through the night. I snuck in for his 2 a.m. dose and otherwise got a much better night’s rest.
The next day, my two goals were to get his pain and his nausea under control. I left his belly to downdrain all day, except when it needed to be closed so he could absorb his pain meds. I also was vigilant in giving the anti-nausea medicine they’d prescribed and I started him on one of his antibiotics for bacterial overgrowth.
Patrick spent most of his day in his own wagon reading books and watching Bob the Builder. But slowly, slowly he got better. He didn’t throw up once.
And that night, again, he slept all night again.
We’ve been home now for 5 days. It’s been an intense week to be Patrick’s mom. He has wanted to be with me every minute, even for naptimes. Trying to keep the right balance with every aspect of his care has my poor little brain constantly working.
But he’s getting better. His belly is still needing to be drained, but only a few times a day. He isn’t nauseous anymore. He’s doing ok with just ibuprofen for pain control during the day, using Lortab just to sleep at night. He’s even asking to eat again. And more than just water and soup.
It’s still a bit too early to say if the surgery was a success. I can say that his outputs have been lower. He’s stooling better. And, though he threatens, it’s been a while since he threw up.
I’m hoping that as he gets away from the pain medicine and his body heals that we’ll see much more improvement.
Only time will tell.
Patrick Hoopes 