Wednesday, December 30, 2009

Return Trip

Since our return home on the 23rd Carly has been increasingly fussy when eating or nursing. Most of the day she was doing pretty well and she seemed to be recovering from her last hospital stay, but every feeding session brought a lot of screaming. This made it increasingly tough to get fluids in, and through the weekend we were concerned that her sodium level was becoming elevated. We took Carly in for a blood lab Monday afternoon, and as expected her serum sodium was very high. The only solution was to head to the emergency room to help hydrate her.

They attempted to place an IV but most of Carly's veins, which are hard to find through her cute baby fat, were bruised up from her last stay at the hospital. The best option was to place an NG tube (nasogastric tube) which is a small tube that is inserted down a nostril and into the stomach allowing fluids to be pushed down the tube whenever needed. The tube was placed while we were in the ER and around midnight we were admitted to the hospital for overnight observation. Carly could clearly tell that we were back in the hospital and she did not like it one bit, but fortunately it was a short stay. By 2pm yesterday Carly's sodium was back to a safe level and the endocrine team was comfortable sending us home to continue to rehydrate Carly. We were trained on how to place an NG tube and Carly was sent home with one in place that we will continue to use until she is reliably eating on her own again. Christa and I had discussed getting trained on placing an NG tube earlier, thinking it would be good to have a way to get fluids into Carly in case of an emergency, so that is a positive that came from this latest trip to UCSF (which is hopefully the last trip for 2009!)

Love, Brad

Friday, December 25, 2009

Merry Christmas

Carly is worn out from the last two weeks in the hospital, but she is already getting stronger after just one day of home time. It was a beautiful day in San Francisco so we took a family walk, had Christmas brunch and a mimosa at All You Knead on Haight street and lounged on our sofa. Christa and I savored every minute of it. We're hopeful that Carly will be back to herself soon, and we wish you all a very merry Christmas.

Love, Brad

Wednesday, December 23, 2009

Our Christmas Miracle

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

Tuesday, December 22, 2009

Big Turnaround

What a difference a day can make. Yesterday at this time Carly was in a very critical state that had everyone worried, including the medical team. Her temperature was up to 104F, her heart rate was 220 beats per minute, her respiratory rate was 105 breaths per minute, and her pupils were unresponsive to light. Around 10pm everything started to settle out and by midnight all of her vital signs were back within her normal range. The team ruled out a shunt problem, and although some blood cultures need a few more days to finalize they are pretty certain that the symptoms were not caused by an infection.

The latest thought is that Carly was suffering from something called paroxysmal autonomic instability. This means that the autonomic part of her brain which controls critical vitals like heart rate, breathing and temperature basically got out of whack and worked itself into a state that it could not recover from. This is something that Dr. Gupta has seen with patients that have had brain injury, and it can also occur with someone who has had surgical procedures like Carly. He said that he has not seen it to the extent that Carly suffered from last night, but added that typically it is a transient occurrence that people eventually grow out of. The symptoms looked very similar to what Carly suffered from during our month long stay in June, but they have never occurred at any other time. Most likely Carly's body was pushed too hard with everything that she has gone through here and her brain could not compensate. This also means that it is not very likely that we will see something like this on the outside.

The best news from the day is that Carly nursed for the first time in over five days. This is always her sign that she is starting to feel better and it certainly makes Christa and I feel relieved. She slept for most of the day, catching up on some much needed sleep. If she can continue this trend there is still a chance that we will be able to go home by the end of the week. While that would be an amazing gift, just seeing Carly feeling better is all I could ask for. (Ok, I'm asking to go home too.) This is yet another experience that is harder than anything we thought we were prepared to handle, and we have no doubt that you have all given us the extra boost we have needed to make it though. The love of many with a shared focus is a powerful force.

Love, Brad

Monday, December 21, 2009

Two Steps Back

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.

Love, Brad

Saturday, December 19, 2009

The Peanut Gallery

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.

The holiday season brings many special visitors to the hospital. A few days ago Carly was visited by the San Francisco Police Department who brought her a stuffed animal as a gift. We chose a gorilla to help remind Carly of her friend Koko. Snoopy Claus made an appearance yesterday, and even if Carly couldn't fully appreciate it Christa and I both thought it was pretty funny. We hope the real Santa Claus gets to visit Carly at home instead of the hospital this year.

Love, Brad

Friday, December 18, 2009

Who's Got My Z's?

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.

Love, Brad

Thursday, December 17, 2009


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.

Love, Brad

Tuesday, December 15, 2009

On the Mend

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.

Love, Brad

Monday, December 14, 2009

The Pressure's Off Reprise

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.

Love, Brad

Sunday, December 13, 2009

Warm It Up c

Another day up on the hill has passed and it was pretty uneventful. Carly has continued to be very sleepy and her temperature has been on the low side so she is resting underneath a pile of warm blankets, wearing one as a hat. Early in the day the neurosurgery resident tapped her shunt to remove some CSF to help relieve some pressure on her brain while she waits for surgery. She was a little more alert after the tap, opening her eyes a few times and even trying to pull out her nasal cannula (the breathing tube in her nostrils.) Her chest x-ray this morning didn't show any change in her pneumonia which is a good thing, and all of her vital signs have remained steady which hopefully means that the pneumonia is not intensifying. Dr. Gupta stopped by in the morning and said that he hopes to be able to get a spot on the operating room schedule tomorrow for Carly's shunt revision. Christa and I both feel very lucky to have the care of doctors and nurses that we trust and the support of all of you.
Love, Brad

Saturday, December 12, 2009

On Hold

Today was a quiet day which is a great thing when in the PICU. Carly has been pretty wiped out since yesterday afternoon, sleeping steadily for the last twenty-eight hours. After the last few days she deserved some much needed rest, and it should help her body fight off the pneumonia bug. Dr. Gupta decided to postpone Carly's shunt revision surgery until early next week to give her body some time to recover from her pneumonia. His biggest concern is that the virus or bacteria from her lungs could find its way into the surgical site, possibly leading to more complications from infection. We could all do without any additional complications and since Carly is comfortable, waiting a few more days for the surgery seems like a good idea. We do have a plan if Carly starts to suffer from high pressure again, but hopefully she can continue to rest and get stronger between now and then.

Love, Brad

Friday, December 11, 2009

Awaited Answers

Carly didn't have a great night last night. She was really uncomfortable and agitated and it was clear to Christa and I that she was suffering from high intracranial pressure. We probably each got around 45 minutes of sleep, but we were able to help Carly get through the night by holding her hand and singing to her. Today was all about trying to find some answers. Carly had a few different studies and tests to check on both the pneumonia and her shunt function and a few hours ago all of the results were in.

It does look like Carly has pneumonia, but it is unclear whether it is bacterial or viral. The treatment for the bacterial version is a seven day course of the IV antibiotics that Carly started yesterday and if it is viral all you can do is wait it out. They also found that there is a clot blocking the flow of Carly's shunt at the distal end, preventing it from draining her CSF as well as needed. Dr. Gupta was consulted and he will most likely operate on Carly tomorrow to replace the faulty parts of the shunt. They have not scheduled a specific time yet as they want to recheck all of Carly's vitals in the morning to verify that she is ready for a surgical procedure, but we should know pretty early in the day. Right now Carly is resting peacefully and we are hoping to get some much needed rest tonight. Thanks for your continued love and support, we can feel its warmth through the cold, rainy weather outside.

Love, Brad

Thursday, December 10, 2009

The UCSF Dash

It looks like another good run outside of the hospital has come to an end. Carly has not been feeling great the last few days, acting more agitated than usual. Christa spent seven hours at urgent care with her on Monday as they ran multiple tests that didn't reveal any problem. After a follow up appointment with endocrinology yesterday we were told to try and get Carly's hydration up over the next few days. Unfortunately Carly decided that she didn't want to eat or drink anymore. After several attempts through the night it became clear that we had to come up to the hospital this morning.

Before we came up today Carly took a turn for the worse and we literally ran her up to the emergency room. She was in pretty critical condition when we arrived and there was a lot of commotion to get her stabilized but she was looking a lot better after a few hours. We are now up in the PICU (a familiar place to us) and Carly is doing pretty well. She is still agitated and not very interested in eating, but she looks much more like herself. A chest x-ray indicated that she may have bacterial pneumonia which they have already started treating with antibiotics as a precaution. Tomorrow she will have a follow up x-ray to see if the area of concern still looks like pneumonia. They are also monitoring the function of her shunt to see if increased cranial pressure could be causing any of her discomfort. We hope to have a few more answers tomorrow, in the meantime we are filling the hospital room with Carly's favorite tunes and a lot of healing energy.

Love, Brad