Hey guys...we have been and still are out of town, so I have been kinda slow to update. Here's the latest on sweet B...
It was a very good and bad day. When I got there, B smiled great big and we threw a little nerf ball back and forth. Then he pointed for me to put chapstick on him and said please. It was wonderful to see him like this.
However, 10 minutes later, they took him to do a procedure removing fluid from his abdomen to test it. Well, the fluid shouldn't be there to start, but if it is there, should be clear. Well, his is very dark yellow tinged pink. The dr think it may indicate a liver problem--something dealing with when they removed the gallbladder and reconnected to the intestines, but not sure. At any rate, they had a hard time sedating him for the procedure.Well, when he came to, he was not the same little guy. He was crying non stop from 3 until 6:30, and got extremely combative. He scratched, clawed, crawled up his bed and became very very strong. They think he had a reaction to one of the sedatives and instead of sedating, it kinda wired him--he was like a little wild man. He pulled his IV's and the PIC line (the feeding IV) out and had to get another IV and will have to go under again to get the PIC line redone. Most likely, if the liver issue is there, he'll have another surgery to repair/etc. They also think he was in a great deal of pain and that, with the reaction just made him irritable.
At one point, he grabbed D's orange juice and sprite drink and started gulping it down--now this is the same kid that didn't even want an ice chip. Then he was crying and reaching for every drink in the room. It was extremely emotional and believe it or not, all happened so fast and for so long, we just didn't have time to call anyone--I didn't even call Charlie till after 6.
When I left around 7, he was given morphine and fetanyl and was resting. D had climbed up in the bed with him and was throoughly exhausted and was trying to rest. C was on his way stuck in traffic. They have a room at the ROnald McDonald House for tonight--C was going to check in and then D's plans were to go take a LONG hot shower and take a nap there while C stayed at the hospital, and then maybe they'd swap off in the middle of the night. She is at the point where she knows she needs to sleep and that she will have to leave B for a little one.
Guys, it was so scary today--But I am glad that I saw him before all this. I think the reaction and sedation was a setback, but I think he'll continue moving forward since he was in good spirits earlier in the day. I'm glad he's in PICU b/c they are monitoring him like crazy and really seem on top of things.
B was going to have surgery today on his liver - the tests that were done yesterday revealed that the fluid pooling in his stomach is bile that's backing up from the liver. They were going to do surgery today, but he had a fever spike last night and has an infection they have to address first. He's on new meds and has a pain pump that D can administer as needed. Hopefully the infection will be gone by Tuesday and he'll be able to have the surgery then - he has to have it or the bile will poison him. As soon as the surgery happens, they're going to work on giving him clear liquids and feeding through the tube. They won't put the PIC line back in b/c of the infection, and since the tube is so close to the heart they don't want to take the chance of infecting the heart. So for now they're just giving him the IV drip. As soon as they get his nutrition sorted out and he's eating again, they will start to address the problems with the heart.
He did have a few more episodes last night with the aggression and reactions to the meds, but is resting now.
It's looking like they will be there about 3 more weeks, and D is not going to the new house until B can come with her. She had to go home without him when he was born, and won't do it again. She is periodically going to the 4th floor to the Ronald McDonald house and taking naps. She understands that she needs to take better care of herself so she can stay strong for B.
Hello everyone, I am just taking a few moments to update you on B's condition. We are waiting for Tuesday to get here so he can have his procedure (possibly Monday). So right now the doctors are just trying to keep him as comfortable as possible. The morphine pump does help some but he still has discomfort and pain. Since Yesterday his belly has been getting larger so hopefully it will slow down so Byson can continue getting his strong antibiotics to get rid of as much bacteria as possible before he goes back in. I do know that the procedure will take about 2 hours and I should know today if it will be done Monday or Tuesday.
On a good note he ate about 1/4 of a popsickle yesterday and had some Apple Juice. This was awesome!! especially considering that it has been 13 days since hes had a meal. We have been moved to the PCU but I did not realize until yesterday that it is still apart of the ICU so there are still restrictions but B is watched very closely.
Keep those prayers coming. We really need the infection to be gone so that he can have surgery tomorrow or Tuesday!
***I also hope to post something late today or tomorrow. We are in Mississippi visiting my Nana and PawPaw. This is one of my most favortie places on earth and we are enjoying every minute of it. Oh, and eating of course. You don't come to Nana and PawPaw's house and not eat. I can smell the ham and purple-hull peas cooking right now! YUM!
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