Patrick is in the hospital trying to recover from surgery. This has been a very hard recovery so far… Patrick has gone through painful things before. But always he was so small that I could just hold him and comfort him all day. Or, he was sedated much longer.Or he was just younger and doing less and thus being kept down was easier.
This stay has been hard. The first day, Patrick was in constant pain. If the nurses didn’t press his pain button every 12 minutes, he couldn’t rest. And then on top of that his mouth was dry and he was queasy. To keep him from pulling the tube out of his nose, they put arm restraints or “no no’s” on him and these are the ultimate in misery for a two-year old. Especially as the crib they have him in isn’t quite wide enough to lay in with arms spread out.
Worst of all, he was scared and for the first 24 hours at least, either Brian or I pretty much just sat next to his bed and held his hand so he’d know he wasn’t alone.
By the end of the second day, his pain was better under control. We had finally convinced the nurses to use the pain button all that they were allowed. Child life brought a tall chair I could sit in next to Patrick’s bed and that afternoon he woke up enough to ask to hold my glasses. I took off his no-no’s and got him a bottle he could play with the lid on. Daddy got him to smile for the first time and he started to talk a little more.
Yesterday, he was supposed to get out of bed and start trying to walk. We decided to start slower than that and started with him laying in my lap and watching movies. That actually went pretty well until he was ready to sleep.
Then, after his nap, he woke and I sat up his bed so he could play. This actually was great for him! He was in much better spirits. However, one major side effect of the pain medicine he’s on is itchiness and it was so bad that he could barely stand it. If his hands were free, he’d sneak in scratching his nose until he made it bleed… even though it was only seconds that he’d have his hands free. His chest and eyes and hair were all just as itchy.
So, in addition to hand holding, my job came to also include rubbing his nose to help the itch.
We tried backing off the pain medication some to reduce the itching, but the result was just that he couldn’t fall asleep because of the pain.
Friends and family came to visit and that helped more than anything else in the day. It was good for him to have other people to talk to and new toys to play with.
But, by bedtime, all of the extra work of the day and the reduced pain medication and the itchiness had him completely worn out. We added one more anti-itch medicine and he finally seemed to settle down – until he started to try to fall asleep and kept being woken. Then he became hysterical and putting on the no nos only made it worse.
In the midst of this, the amazing nurse who had gotten us through two excrutiating nights came back for a third shift. He took a quick look at the situation and decided to help. He told me he thought I needed a good night’s sleep and so did Patrick. And so he made arrangements to be in the room for one-on-one nursing for the night. And finally convinced us that it was ok to leave.
Brian and the nurse gave Patrick a blessing of comfort as he slept, and then we left him and went home. I was asleep as soon as my head hit the pillow.
While we went home to rest, Nurse Dan stayed in the room to make sure that pain medications, anti-itch medicines, antibiotics and the rest were all given as often as possible so that he’d have a good night’s sleep.
Not only that, but he decorated the crib to make it more interesting and sat up and played with Patrick when he was awake.
It was amazing and by morning, Patrick was no longer having fevers and seemed well rested.
This morning, we told the doctors on the pain management service about the itching and they prescribed a drug called Narcan that takes away the itching from narcotic pain meds. It runs all day long along with the pain medicines.
But it took some time to get the orders through the pharmacy.
While we waited, the nursing assistant helped me to give Patrick a sponge bath and get him out of bed onto my lap. He was still really uncomfortable and didn’t move much. But I was determined to get him upright and kept sitting him up a little more and a little more as he watched Disney channel. I finally got brave enough to sit him all the way up for a second, and it was too hard and made him cry, so I told the team when they rounded that he wasn’t ready yet today.
Then the narcan came and right away he seemed to relax. And then, out of the blue, he started saying “up, up” and trying to sit up. So I helped him up to see what he wanted… he wanted me to show him how to raise and lower the crib rail next to us. And he was willing to sit up to do it.
He was really wobbly and kind of stiff needed a lot of support from me to do it, but he spent the next half hour sitting up playing on my lap. It was amazing!
He spotted my cell phone so we called daddy to tell him he was sitting. But, in playing with the phone, Patrick dropped it… and decided to go get it. He started trying to inch off my lap.
So, very slowly I set him down on the floor. He couldn’t quite find his feet. It was like standing on ice. But he stood for nearly a minute with a lot of support.
Then I picked him up and he played another 15 minutes on my lap before his nurse came in and I had her help me get him back into bed.
He was pretty tired by then and started trying to get to sleep. Of course, being in the hospital means that a pump alarmed and other things happened and it wasn’t quite happen. Patrick started to seem to resign himself to staying awake.. So I proposed something kind of big to Patrick.
I asked him if he wanted mommy to rub his hair or he wanted mommy to go bye-bye.
He chose bye-bye. And I went to lunch while he put himself to sleep for a nap.
And that’s where we are right now. It’s been one of the most difficult weeks we’ve experienced with Patrick. I can’t even figure out how it came to be Thursday already.
We’ll see how the weekend goes. Patrick’s got a long way to go before he’s ready to come home and I don’t know if he’ll make it home on Monday. But today he took some huge strides. With blood cultures negative and fevers gone they should be able to stop the antibiotics soon. And if he gets up and moving his bowels should start to do better, too.
Already, though, we are draining 1/4 of the volume from his gut. And that should only get better as he recovers. The color is already improving, a sign of improved health. So it appears that the surgery may have made a difference for him.
Keep those prayers coming! We feel their influence every day.
Patrick Hoopes 