Danny is doing amazing recovering. Since surgery all his pancreatitis numbers have calmed down and he is back to "normal". This is wonderful which means the trigger for this attack seems to have been the gall bladder. Which going into the surgery we all weren't too sure if the gall bladder problems were in fact THE reason, we knew it was a problem that needed to be addressed but was it the problem driving his pancreas to get angry. With Danny having multiple medical complexities it is not a cut n dry thing with what could be wrong, so my best option was to remove the one potential trigger that I KNEW was going on. Now because the gall bladder is out it doesn't mean he won't have another episode but I can only hope. The surgery went well, the gall bladder wasn't "impressive" (as they say for bad things in the medical world), and his labs are continuing to regulate. His pain meds are needed further apart which is a great thing, but his his BIGGEST hurdle today is pain driven from coughing and wretching. It's very difficult to watch him cry, it's just breaks my heart. I used to think that since the trache it was hard to watch the "quiet" cry but now the cries where he can actually push air up n out to make squeaks and whines are MUCH more heart breaking. The "plan" today is to start up zofran to help with the wretching and change his meds back to oral from IV. Thankfully he is still on TPN for nutrition so most of the meds he he normally gets at home are in the TPN as they are vitamins that he lacks. This is a HUGE step to going home is if tolerates his meds via gtube. We can do the rest of recovery and getting back to normal at home once he is ok with meds in the gut. He'll need to
****med in gut did NOT work this am, poor bug. Another time :(******
Well this is alil set back, but we're still doing ok. Slow n steady is the game Danny plays. He IS being on his own already so we know one system is back up n running :). The wretching has gotten pretty bad even with the zofran, how painful after an abdominal surgery, so I hope it subsides soon.
We've learned that Danny grew a new strain of pseudo in his trache aspirate so he's been put on an antibiotic for that....funny they now had him a dx for tracheitis when we really came in with it, but the pancreatitis and gal bladder trumped it :(. Infectious Disease also found him positive once again for VRE, which I'm totally bummed about. He got this wonderful bug from a friend his nurse was paired with in the crash of '09. Danny needed to have 3 negatives with a certain time frame not on any antibiotics so it s taken this long to get all the tests in. The one would have been the last negative he needed to be out of VRE isolation, but unfortunately it came up positive :(. I don't think we'll try the process again and just bow down to being in isolation forever. It's not a bad thing, meaning the opportunity to pass him more bugs is less likely, but I'm said that he can't have "fun visitors" like the therapy dogs or baseball players come in when they are here. Isolation on top of being inpatient is just another stressed as you just feel like out casts with all the gowns in gloves they need to where to just come in. I feel bad for my Lil Man ...... That no one will touch him in house without those blue gloves n yellow gowns that are so "inviting". You know what I mean?
Dan and Avrianna came down yesterday evening and it was nice to see them. But its a bitter sweet to see them and then watch them drive away, usually with tears in both Avrianna's and my eyes. I miss them so much :). It's never an easy time to be away from your family, but luckily I so blessed that Avrianna does really well when I'm gone .... Wish I could say that about Ms Bailey this time. Yesterday would have been Danny's 8th birthday celebration party and it makes me very sad that we had to cancel it. Just means we will need to plan a bigger n better party later :)
Where Are You Christmas?
22 hours ago