Friday, October 31, 2008
B, C and c
Thursday, October 30, 2008
Carly continues to do well otherwise. The ophthalmologist said that there was noticeable improvement in the past week in her ability to control her eye movements. A development specialist brought Carly a few new toys to play with and she particularly likes the red pom-pon and Mardi Gras beads. We will make sure that the red pom-pon is swapped for a gold one soon, they may be having a terrible football season but she still has to support the Boilers.
Monday, October 27, 2008
Carly is doing well and we certainly appreciate the baby gifts, hugs, phone calls, cards and blog comments. You are all a great support to us.
Thursday, October 23, 2008
Our other appointments this week have gone well and all of the various specialists are very encouraged by Carly's progress. She will start having weekly home visits to help with her vision development and we will continue to get blood tests for her sodium level every other day. A few of the doctors, including the director of the ultrasound lab, have mentioned that Carly's tumor was the biggest they have ever seen in someone her age. While this isn't the type of record we wanted her to set, I have a feeling it is not the only record she will be breaking in her lifetime.
Monday, October 20, 2008
Over the last few days the area around Carly's incision has swollen considerably (we have joked that instead of a forehead she has an eight-head.) To ensure that the swelling was not affecting her brain she had an ultrasound this afternoon. The results looked great and all of the key brain areas are healing well. To address the swelling Dr. Gupta will perform an outpatient procedure on Thursday to extract the fluid that is trapped between her skull and her skin. They will wrap her head in a bandage for a few days in hope that the pressure will discourage the fluid from returning.
The last bit of news from the last few days is that Carly has taken to eating solid foods like never before! Prior to surgery Christa had been working on getting Carly to like solid food, but it would take more than twenty minutes to get her to eat a few teaspoons. Today, Carly polished off a half container of banana baby food before moving on to carrot. This will make it so much easier to help her put on some much needed weight.
Friday, October 17, 2008
Thursday, October 16, 2008
Wednesday, October 15, 2008
Carly had her first outpatient blood lab this morning, something that she will need to do every day for at least this week and at some interval for weeks to come. There is something to be said for someone who spends their entire day taking blood from little kids, because this nurse did an incredible job. She got the amount needed in a matter of minutes with very little crying on Carly's part (very different from the last 20+ lab draws that Carly has had to endure.) Christa said that this was another great birthday present. While Christa opened her other presents tonight, Carly spent much of the time entranced by a glowing egg. Too cute.
Tuesday, October 14, 2008
Monday, October 13, 2008
We are starting to get a clearer picture of what we will need to do for Carly in the coming weeks and months. Carly will have MRI imaging every three months to monitor the remaining tumor. Should it stay unchanged they will leave it for the time being. Should it start to grow significantly they will need to perform a second surgery which would be very similar to this round. There is a chance that if it does not grow appreciably before her third birthday that it could then be treated with radiation, but this is an outside chance. Because of the location of her tumor, there has been decreased function of her pituitary gland. At this point it isn't known if this is just a temporary issue while there is post surgical swelling in her head, or if it is permanent damage. Carly will need thyroid hormone replacement daily, cortisol replacement three times daily and daily injections of DDAVP to help control her hydration levels. At some point down the road they can test again to see if her body has healed enough to take her off of these medications and we will continue to envision this as the ultimate outcome. If the damage is permanent, it can be be dealt with using careful monitoring and medication and she can live a normal life in all other areas.
We will also immediately begin seeing vision and developmental specialists to ensure that Carly can make up for any lost time. We are blessed that we are already being connected with a great network of experts in these areas and we know that with some effort on our part and by Carly she will get where she needs to be. It is very clear to us that your love and support helped get us safely this far, and we will continue to need it as we try to get Carly back on the path that we have envisioned for her since she was born. Hugs all around.
Sunday, October 12, 2008
Carly had two blood draws today which is never her favorite but she calms down pretty quickly afterward. I gave Carly a shot for the first time, something Christa and I will have to do once a day when we get home. It is now looking like Tuesday may be that day, but we know better than to plan on it. The most important thing to us is that she continues to get one step closer to a completely healthy brain.
Saturday, October 11, 2008
Friday, October 10, 2008
After review by the tumor board, the decision for the next step has been made. We will be going home early next week once they have a good handle on her hormone levels and how to properly medicate to keep her in the right range. This will mean giving her several hormones on a daily basis, but with them and with so much tumor removed they expect her development to really start to take off. Her development will be closely monitored and every three months she will get an MRI to evaluate the size of the remaining tumor. If she develops as well as we expect and the tumor does not grow then they will continue to hold off on a second surgery. At some point some action will need to be taken on the remaining tumor, it is just not yet known if that will be in a few months or more than a year down the road.
Again we have to tell you how much we appreciate all the love, support, and strength you sent to Carly and us during this long week. I am convinced it made this time easier on us and that it gave Carly the extra boost she needed to get this far. She will continue to need your help as she moves on to the next step on her way to full recovery and I know that you are all there for her. Thank you so much.
Thursday, October 9, 2008
Today they also removed every wire and tube that had been attached to Carly. We can easily hold her, and tomorrow we will take her for her first walk outside for some fresh air on the 6th floor patio. We also expect to hear the next steps in Carly's treatment plan tomorrow. It seems that this will likely be a second surgery several months from now, giving Carly time to grow and develop before going through this a second time. She has already shown us that she is strong enough to beat it.
Wednesday, October 8, 2008
Today Carly had a CT scan to evaluate the swelling in her brain and everything looked good. They removed the drain from her head and used one stitch to close the hole. Although Carly didn't particularly love this it has made moving her from her bed significantly easier and we are one step closer to moving out of the PICU. I can't tell you all how much your support and love has helped get us this far, we appreciate it each and every day.
Monday, October 6, 2008
We are still in the PICU (pediatric intensive care unit) with two final hurdles to cross before we can move to a regular hospital room. Since the operation Carly has had a drain line in her head to manage any excess fluid that was likely to be produced after the operation. They have been monitoring this and expect that they can take this out either tomorrow night or Wednesday. That's hurdle number one. They are also trying to get Carly's sodium levels under control, a critical part of hydration and proper bodily function. This has been fluctuating a bit, which is not unexpected, but it requires hourly checking. Once this stabilizes we are free to move on to a standard hospital. You would never think that a regular hospital room could be something so revered but having a private bathroom, room for two parents to sleep, and freedom from a myriad of wires and constant monitoring will be great.
Saturday, October 4, 2008
We spoke a bit with Dr. Gupta and he continues to be happy with her progress. He seems fairly certain that a second surgery is in her future, the question being whether that would happen sooner (a week) or later (several months to a year+.) We will be in the ICU until at least Monday, and then we should start to get a more firm plan on the next steps.
Thanks for the continued support, it is definitely helping power us all through this.
Thursday, October 2, 2008
Carly had another MRI this afternoon to provide a clear picture of what tumor remains. This will help the team determine the next steps. Just a few minutes ago they removed Carly from her ventilator so she can breathe on her own. It was so nice to see her cute little mouth again.
The surgery took longer than anyone expected because the tissue ended up being more fibrous and vascular than anticipated. This meant they had to move slowly and replace a lot of blood along the way. Dr Gupta said that the tumor had a well definied boundary and should they decide on a second surgery he expects that they could get out quite a bit more. They stopped when they did because 15 hours is a long time for a little girl to be under anesthesia. We will learn more about the next steps as they observe Carly over the next few days. Thanks again for your continuing love and support. The nurse said that Carly is a very strong baby and we know that you are all contributing to that. Keep up the good work!
Wednesday, October 1, 2008
We will keep you all posted, now it is time to get some rest. We love you all.
Wednesday is finally here, and it is time for Carly to get this tumor out. We are walking up to the hospital now for our 6:30 check in. We expect that Carly will go under anesthesia around 7:30 and at 8:30 they will begin the surgery. The surgery could take eight hours or more so it will be a long day of pacing around UCSF. Fortunately they will phone us every hour or two with updates on Carly's progress and we will have family and friends with us to help pass the time. I will try to post updates to this blog from my phone as they come today as long as technolgy doesn't fail me.
Christa, Carly and I wanted to thank everyone again for all of the good wishes, positive energy and prayers that we have received over the last two and a half weeks. It really has been an increabile help during this time to have your support and love.