Friday, January 29, 2010

Weekend At Home

The last few days have been a whirlwind, which has fortunately ended with us back at home again. We spent the last two nights up at UCSF dealing with Carly's most recent curveball. It looks like the biggest issue that sent her there was dehydration, even though her sodium (which we track very closely) was at a normal level.  Once an IV was placed and Carly was able to get some fluids, her heart rate began to lower toward more normal levels and she started to look and feel a lot better.  She had a decent day yesterday and overnight she slept pretty well, but was still bothered by something that clearly did not feel good.  Late in the day today test results came back that showed on top of dehydration Carly also has a urinary tract infection.  That helps to explain some of the pain that she has been having, and is now being treated with antibiotics.  Once again, living as close as we do to the hospital helped convince the doctors that Carly could head home early and we walked through our front door a few hours ago.  We are enjoying our family time at home and expect that Carly will feel better as the weekend passes.  Thank you for keeping her in your thoughts and prayers.

Love, Brad

Wednesday, January 27, 2010

Never Forgotten

January 27.  It is a day that will always have meaning to us, no matter how we wish it didn't.  Two years ago we lost one of our closest friends, Tyler Palmer, to a tragic ski accident. He meant so much to so many, it is still hard to believe that he is not with us.  Tyler did a lot of charity work, including several trips to Haiti with Engineers Without Borders so the events of the last few weeks have made me think of him that much more. Tyler introduced me to my wife Christa over ten years ago and for that I am forever grateful.  I said this last year but it is as appropriate as ever: In honor of him go enjoy the outdoors, make a conscious effort to do something that helps our planet, and give someone a big heartfelt hug. We love you Tyler.

I wanted to write that post earlier today, but we ended up spending most of the day at UCSF trying to get to the bottom of a new issue that is bothering Carly.  In the night she started grunting a lot and that has continued all day.  She seems to be having abdominal pain, had some blood in her stool and started throwing up later in the day.  After a day of tests we were sent home, only to have to return to the emergency room a little while ago as Carly was not improving.  I am writing from our small room in the emergency department now, where we are likely to spend the night as there are few rooms to spare on the hospital floor.  Carly is resting a bit now for the first time today, and we are hoping that some of the tests they are running will help shed some light on her most recent issue.

Love, Brad

Friday, January 22, 2010

Helping Each Other

Carly has been free from her NG tube since Tuesday and she continues to eat well.  She has also graced us with a few more smiles over the last week and every one is a wonderful gift. A belly ultrasound yesterday showed that she is still absorbing the CSF that her shunt is sending into her peritoneum too, so it continues to look like her new shunt is working. All of this good news means that she can now get back to her physical therapy sessions and start making up for some lost time.

I just noticed a poll today that asked people if they have donated to humanitarian aid in Haiti.  Of those polled, 48% had donated and 52% had not, and honestly I would like to see the number that have donated be much higher. I am sure everyone that reads this blog is aware of the disaster that has happened to this nation that had already seen more hardship than any nation should. We have been through a lot over the last two years, but we are still so much more fortunate than so many in Haiti. If you have not already, please consider donating to Haitian relief and we will also help by sending the power of Team Carly their way.

Love, Brad

Monday, January 18, 2010

Getting There

The last week had a mix of ups and downs for Carly, but fortunately the last few days have been an upward trend.  For much of the week Carly was really uncomfortable, with stretches of inconsolability. There was no clear reason for Carly's discomfort but fortunately that started to take a turn for the better on Saturday and she had a good Sunday too. Carly's shunt is definitely working, and her peritoneum is absorbing the CSF which is a big relief and a good sign that we may be able to put shunt problems behind us for a little while.  On Saturday Carly started eating pureed solids and this morning Carly nursed for the first time since Christmas, both major steps forward.  For nearly three weeks all of Carly's feeding have come through her NG tube, but if she keeps up her eating ways for another day we will finally be able to take out the NG tube! Carly has also smiled a few times over the last few days, including a really cute one right now as I type.  We had not seen her smile since October 31st, so you can only imagine how heartwarming that has been for us to see.  Hopefully all of these great steps over the last few days are just the beginning of good times ahead.

Love,  Brad

Tuesday, January 12, 2010

Happy Carly Day!

Our little girl is all grown up!  Well, that may be an exaggeration but it is hard to believe that Carly turned two today.  The last year and a half have not been easy for her, yet no matter what challenge has been thrown her way she continues to be resilient. She is still not feeling great since her surgery last week and there are some unanswered questions as to what is bothering her but we are all thankful that she got to spend her day at home and outside like a little girl should. Thank you all for the love that has helped her get this far, and continues to lift her up every day.

Love, Brad

Saturday, January 9, 2010

Hometime Healing

Carly was discharged this afternoon and we made our family walk back down the hill.  She had a lot of post-operative pain that lasted into the night yesterday and we expected we would need to stay until Sunday, but this morning she was feeling a lot better and we felt ready to return home. She continues to be a bit uncomfortable from her surgery, but we can manage this at home and it should subside over the next few days. While she still needs her NG tube for her feeding, we are hopeful that she will be ready to nurse again soon. Her strength never ceases to amaze me.

Love, Brad

Thursday, January 7, 2010

Eight Is Enough

After a long day of waiting for a spot in the OR, Carly went into surgery at 4:12 this afternoon.  The surgery went very smoothly and was over in less than two hours.  Dr. Gupta replaced all of the shunt hardware and Carly now has her eighth shunt. She is a bit sore and fussy from the surgery, but seems to be settling down now for some well deserved sleep.  Thank you for sending love that helped to guide our little angel through another procedure.

Love, Brad

Wednesday, January 6, 2010

Another Shunt Bites The Dust

Carly's shunt function test showed what we had been thinking for some time, this shunt is not working properly. It looks like there is some type of obstruction in the catheter that runs from the shunt valve to her heart preventing it from draining properly. It is very likely that this clogged soon after her last shunt surgery and all of the symptoms that Carly has shown over the last few weeks are a result of high cranial pressure.

Carly is scheduled to have surgery tomorrow to replace the latest faulty shunt. Dr. Gupta said that he is ready to try a VP shunt again (a shunt that drains into the peritoneal cavity, rather than her current VA shunt that drains in the atrium of her heart.) If you remember the beginning of Carly's shunt saga, she once had a VP shunt but her peritoneum would not absorb the cerebral spinal fluid drained there. This was pretty unusual, but the theory is that residual tumor present at that point was responsible for making the CSF difficult to absorb. She is now tumor free and the hope is she will be able to manage the CSF allowing her to stick with a VP shunt which typically has less complications than a VA shunt. We envision that 2010 is going to be Carly's year despite a rocky beginning, and there is no better place to start than her surgery tomorrow.

Love, Brad

Tuesday, January 5, 2010

On Pins And Needles

Last night was far from good for Carly. Her shunt adjustment that allowed it to flow more easily seemed to offer a little improvement earlier in the day, but as night came her discomfort escalated. She wasn't able to sleep for more than a few 20 minute patches and Christa and I rocked, held, bounced, and walked with her throughout the night. At 5am the neurosurgery resident adjusted Carly's shunt down once again which seemed to help for a couple hours but she became inconsolable again into the morning. Needless to say we were very concerned and hoping that there would be some answers today.

Carly had a head CT scan at 11am to see if there were obvious signs of too high or low cranial pressure. The scan didn't show any changes from earlier in December, but looking back at a scan from September they saw a pretty big increase in ventricle size between then and the December scans. This could indicate that she has been under higher than desired pressure for many weeks and could possibly explain her recent problems. The neurosurgery nurse practitioner said there is a chance that the most recent shunt setting will help her get to a pressure that she can tolerate. She added that there is also a possibility that this shunt is not functioning at 100%, restricting the flow and adding to her pressure issues. They have scheduled another study for tomorrow to help evaluate the shunt function to help rule out another shunt malfunction.

When they shared these details with us Carly had been resting pretty peacefully for almost an hour, a major improvement from the night. Carly has continued to rest peacefully since then and has now been at peace for almost six hours. She hasn't been this comfortable for many days and it has lifted our spirits to finally see her doing better. We don't know if this will keep up though the night or not, but we are cherishing every minute of it and are hopeful that this is the beginning of the healing trend that we have all been waiting for.

Love, Brad

Sunday, January 3, 2010

Revolving Door

Against all of our best efforts we have found ourselves in the hospital once again. After our short stay on the 29th Carly continued to refuse to eat but fortunately we had the NG tube in place which allowed us to keep up on her diet and fluid needs. She was very fussy during the night of the 30th, keeping us up all night trying to help her feel comfortable. She did pretty well on the 31st, but then become very agitated again on the morning of the 1st and she stayed that way all day and into the 2nd. By 9pm yesterday it was clear that her agitation was too extreme to continue to manage at home so we made our way back to the emergency room and were admitted back to the hospital (although this time to a regular room on the quiet 7th floor instead of the PICU.)

The neurosurgery team believes that the issue may be that Carly is sensitive to small changes in cranial pressure and her current shunt setting is too high for her to tolerate. They turned the shunt down one setting last night with hopes that this would give her the relief she needs. The change may have had a small effect, but Carly continues to be uncomfortable. She had two periods today where she rested for 45-50 consecutive minutes which is a lot more that she has done in the last four days but she still has a way to go. There is a chance that she needs more time to adjust to this current setting, but it is also possible that her shunt needs to be adjusted down one additional setting. We will decide in the next few hours whether or not to change the shunt setting, and either way we are really hoping Carly can get some comfortable rest tonight. Your healing love is much appreciated.

Love, Brad