Friday, September 30, 2011

One day at a time.

I can't seem to find the patience or words to sit down and type, but I'm trying because I know there are more than a few people that are waiting for an update on how our boy is doing.

The good news: we're seeing small steps in the right direction. They switched his PCA pump from Morphine to Dilaudid a couple days ago. At first we didn't see any difference at all and were feeling a little discouraged. They then began to start the process of switching to a new pain med, Methadone. It's not used in our hospital often and many are not comfortable with it, so it was causing a bit of an issue among the nursing staff. It all came down to not being sure how to use it. The palliative care doctor that's overseeing Wyatt's pain management was off for the day and there was a lot of confusion swirling. They eventually came up with a plan, but as they were finalizing said plan Wyatt began to perk up a little. So much so, with the physical therapists help we were able to transfer him and all his lines/attachments into a reclined tumble form chair sitting in his bed. It wasn't easy and at first caused him to forcefully retch, but his shaky muscles relaxed after some time and he settled back into the soft seat. He looked so different than just a few days prior...a good different! He was sweating as his muscles were working so hard. A neck pillow holding his head upright and a new comfy blanket laying over him.

His pain is slightly decreased. We decided to not go with the methadone last night for several reasons. One being they couldn't seem to coordinate it all and it would have left him approximately 18hrs without pain medications. 18 hours is a very long time to a 9 year old, let alone a child that is in so much pain! We weren't sure the dilaudid was doing anything, but I wasn't quite comfortable with taking the chance of stopping it, just in case. So, with this small improvement of pain we decided to keep going with the dilaudid for the time being. I talked with the palliative care doctor this morning who said she would be meeting with the nursing staff to go over how the Methadone should/could be handled on the floor. We know this will be in his future and it's clear that his entire "team" needs to be aware of how it'll be delivered and handled, so that we're all more comfortable with the situation.

This morning he has been (again) forcefully retching and vomiting several times. The last time being when the doctor walked in to say hello for the day. After talking and witnessing the force that's associated with these "events" she decided to stop everything that's going through his GI system....his system isn't moving, absorbing or tolerating any amount of anything at this point. He's not tolerated anything for awhile now, but his body's reaction to even the most minute change is now extreme. The medications that were able to be moved to an IV form were long ago, but we were stuck with a few enteral meds that had no alternative route to be given. We stopped giving the majority of the enteral meds already earlier in the week, but were left with two. But even those two small amounts are so hard on his body, it's just not worth it.

He's puffy and retaining fluids. His heart rates are a bit lower, though his respiratory rates are even more increased than yesterday. His breathing is labored, shallow and fast. This is his body's way of compensating for the greatly enlarged organs pressing on his diaphragm and down through his pelvis. We've been using the bi-pap machine to our advantage and having him put it on for several hours during the day, as well as when sleeping. Giving his body time to rest and fill his lungs more than what he's able to do on his own. His blood pressures are greatly increased today, which they're keeping an eye on. It's a delicate balance keeping this boy in check. Each day there are new infusions being added and things that need tweaked, looked at and/or changed completely.

But he's hanging in there. One day at a time.

We have a couple of exciting things popping up here in the hospital in the next day or two. I promise to share and hope to have pictures to include! Stay tuned...
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