Another hurdle to jump

Apologies for not updating sooner but it's been a totally crazy week!

We took B in for a transfusion on Sunday 1/13. Business as usual, in and out in about 5 hours. Monday morning he had his surgical follow-up. Dr Bass said she would like to start him on a new medication to help with his continual gagging & retching since she feels it is due to B having very delayed motility. We were told that surgery would contact our pedi and we would be given a script. So far, no script! Grrr. Tuesday we followed up with the pediatrician. Nothing new there, just a weight check and a quick exam. Wednesday things started to head down hill. For some reason, VNA screwed things up and took B off their schedule. This meant that by Wednesday he hadn't seen a nurse since Sunday. So I called and was told they couldn't get anyone out to see him until the next day, Thursday. Then I called and left a message with Lynn, the Heme NP, to see about Brady's weekly IVIG. Never heard back. By late into the night Wednesday I was getting pretty concerned about his color, heart rate, and respirations. I called Tim at work around 4am and asked him to leave early so we could take him in ASAP. I then paged the on-call hematologist to give them a heads up that we would be on our way. Tim took him in and they got there just before 6am. They tried to draw blood and realized that his PICC line wasn't working. From that point nothing went right. It took the docs all day to decide what they wanted to do about it. Tim & I switched off at the hospital around 4:30pm. Finally, around 5pm they brought in a NICU nurse to place a temporary IV line and then at like 9pm started a blood transfusion. After waiting nearly 14 hours his hemoglobin had tanked and was down to 4.1! Since then we've been struggling to get his hemoglobin stable again. After that initial transfusion he only came up to 5.5 so they transfused again and discharged him late Friday night. By Saturday evening he was really struggling to breathe and just did not look good so we rushed him back in and he was transfused yet again. This time Mommy through a fit and demanded they give him a larger volume of blood. His hemoglobin went from 5.3 to 8.8 after the larger transfusion and we were discharged again last night.

Today, he will be readmitted! Throughout all this they've been tracking his liver function also. His enzymes are remaining elevated and his bilirubin is steadily on the rise. They don't yet know why but its clear B's liver isn't functioning properly. So tomorrow he will have a liver biopsy. In most cases, its a simple outpatient procedure but of course nothing is simple with B so he needs to be admitted and observed closely. The biopsy will be done in the OR under general anesthesia so he will need to be intubated. In the past, he has struggled with getting extubated and needed some ventilator support but we're really hoping that won't be the case this time. If all goes well and he breathes on his own post-op then he will stay the night on the heme-onc floor and be discharged the next day. Otherwise, we're looking at yet another PICU stay :(

So we are once again asking you for prayers. His procedure is scheduled for 11:30am so if everyone could just say a quick little prayer for him at that time we would be extremely grateful.

Love & thanks as always <3