I can hardly believe it, but Carly was discharged this evening and after two weeks in the hospital we are finally back at home. Once again, the fact that we live so close to the hospital helped convince the team at UCSF to let Carly go home sooner than they would have in most cases. We will be on high alert the next few days making sure Carly doesn't have a relapse, but that will be much easier to do in the comfort of our own home. I know we will all sleep well tonight.

Love, Brad

Over the last few days Carly has been having increasingly bad days. The staff in the PICU expected that it was a bug that would pass, and Carly was moved to the regular floor of the hospital yesterday afternoon. She was very irritable all last night, with Christa and I doing everything we could to keep her calm. By late morning she started showing more serious symptoms and after another head CT scan she was sent back to the PICU. The head CT looked normal and Carly's shunt seems to be working, so the exact cause of her symptoms is still unknown. Fortunately, a few hours ago they were able to finally get Carly to a more restful state. She will have an overnight EEG study and tomorrow we will meet with the neurology and neurosurgery teams to come up with a plan. We will keep you all posted, and your love and support is helping all three of us.

Carly had a decent night and today was pretty quiet as well. She is still uncomfortable, refusing to eat and has only opened her eyes to peek out a few times but we are hopeful that she is starting to trend in the right direction. The CT scan of her head last night didn't show any surprises which is reassuring, and it was clear that the shunt is working properly. There is a chance that Carly is agitated from too much drainage from the shunt so the neurosurgery resident stopped by today and adjusted the valve so it flows more slowly. We will see over the next few days if this makes the difference we are looking for.

Unfortunately Carly had another bad night. She started getting really agitated around 1 am and it kept up for about six hours before she finally settled. She has done pretty well for most of the day, fussing a bit and usually consolable but she is still not feeling like herself. She is due to have a head CT scan at some point tonight to make sure nothing in her head looks unusual, and we will do our best to make sure she has as restful a night as possible. Thanks for all the love you are sending our way, it helps make up for some lost sleep.

Carly didn't have the best night last night. Around 5pm she starting getting very agitated for an unknown reason and it kept us up for many hours before we finally gave her a big enough dose of a sedative that helped her finally relax. Today she has been less agitated but she is still uncomfortable and is not interested in eating once again. One theory is that the drop from high cranial pressure to lower (normal) cranial pressure is an uncomfortable change that takes a few days to adjust to. There is another theory that one of her medications was reduced too quickly, or that the pneumonia is causing the agitation. She is still uncomfortable now but less than last night and we are hopeful that she will get some much needed rest. We will explore all of the theories tomorrow and hopefully something will help her feel more like herself.

Carly was taken off the ventilator this morning and it was great to see her cute pudgy cheeks that had been hiding behind the big pieces of tape holding the tube in place. She opened her eyes more than she has this entire stay and looks much more comfortable than we've seen in several days. Most importantly she nursed from Christa for the first time in almost a week, and seemed hungrier than she has in a really long time. Chest x-rays taken this morning don't show any major changes in her pneumonia which is a promising sign that things are likely to get better rather than worse. She has a lot of spots that must be sore from incisions, needle pokes and general soreness from surgery but she is a tough little cookie that we can't help but be proud of.

Carly's intracranial pressure was building up all day and she was very uncomfortable so we were counting the minutes until she could have her surgery. She headed into the operating room at 4pm for the shunt revision, and they finished just after 6:30pm. Dr. Gupta said the surgery went better than he had expected and they were able to pass a new catheter down the same vein they originally used which helped minimize the number of incisions that Carly needed. Carly was intubated for the surgery and they were able to remove a significant amount of junky secretions from her lungs which should help her recovery from the pneumonia. She will remain intubated overnight, and if she is breathing well on her own tomorrow they will take her off of the breathing machine. Thanks for all the love and prayers that helped keep Carly safe through another surgery.