Thursday, January 29, 2009

Lap Time

Here's Carly sitting on her mom's lap. She (and we) thank everyone for the love and support, it's helping the healing move along.

Love, Brad

Tuesday, January 27, 2009

Healing and Remembering

The last week has gone well for Carly, and this shunt is clearly better suited to her. The excessive pressure in her brain has not come back and she has been much happier for it. During the last round of increased pressure Carly stopped using her right arm and leg like she typically would and that has not returned to normal yet, but does seem to be improving. She had her best physical therapy session ever yesterday, playing with toys and smiling a lot.

Today we are all thinking of our dear friend Tyler Palmer who we lost on this day a year ago. The last time Christa and I saw him he gave Carly a kiss on the forehead, and I know that he has been watching over her through all this. 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.

Love, Brad and Christa

Tuesday, January 20, 2009

Home Once More

Carly got the green light to go home and is happy to be out and about again. The new shunt is making a big difference already and now we can once again focus on helping her get stronger. She is a remarkable little girl.

Love, Brad

Sunday, January 18, 2009

Third Time's A Charm

Carly's surgery is over and she is just waking up from her anesthesia. Dr. Auguste replaced her shunt valve with a programmable version that allows them to adjust the flow when necessary and it is set at the lowest setting to let her brain get some relief from the pressure. She looks really peaceful and we are all feeling confident about her new shunt.

Love, Brad

Saturday, January 17, 2009

Surgery Tomorrow

We got word earlier this afternoon that Carly's surgery is scheduled for tomorrow morning. We don't know the exact start time but expect that it will be around 10am-12pm. The surgery should last around two hours and then she will recover in the PICU for the next few days. We will keep you posted on the progress and really appreciate all of the love and support.

Love, Brad

Not So Fast

Just when we thought Carly was in the clear for awhile we have ended up back in the hospital. On Thursday Carly was pretty tired but we thought it was simply needing to catch up on sleep from the recent surgery. Yesterday she was still really tired and when she wasn't sleeping she was upset and crying which is not like her. By last evening she stopped wanting to eat so we knew something was up. We came up to the ER around 11pm and they admitted her back into the hospital a few hours later.

The problem seems to be that Carly continues to have too much pressure on her brain even with her shunt. The shunt valve takes a certain amount of pressure to open and let fluid through and that level of pressure seems to be more than her head can take. The solution is to replace her shunt with one that takes less pressure to operate. The surgery is basically identical to her original shunt surgery and they are planning to do it later this afternoon or early tomorrow. Hopefully this will be the last surgery Carly needs for awhile and she'll be all smiles again soon.

Love, Brad

Wednesday, January 14, 2009

Home Again! Home Again!

Carly set a new personal record for release time from the hospital, getting discharged from the PICU this afternoon. After all that she has been through she is a little tired but the improvement from the release of pressure in her head has been immediate. We are really lucky that we live as close to the hospital as we do because we were told that this, plus the fact that Christa and I understand how to closely monitor Carly, are the reasons why she was allowed to go home so quickly. As we walked home from the hospital we realized that it was exactly one year ago to the day that we were discharged from the hospital and made the same family walk home with our two day old daughter. It felt just as good as it did then.

Love, Brad

Tuesday, January 13, 2009

Another One Down

Carly's surgery is over and she is recovering in the PICU once again. It turns out that the tube that ran from the fluid cavity in her brain (ventricles) to the shunt valve was clogged with tissue. This clog made it impossible for the extra fluid to drain, resulting in too much pressure in her head. They replaced the clogged tube and spent a lot of time making sure the shunt had a watertight seal at her skull. Carly should be feeling an immediate relief from the drainage of the fluid and will hopefully be back to herself in a few days.

Love, Brad

Surgery Time

Carly is back in the OR now for a shunt revision. It looks like there is not an infection, but instead some problem with the shunt hardware. The surgery should last a few hours. Thanks for the prayers and love.

Love, Brad

Monday, January 12, 2009

Birthday Girl Part II

Carly had a CT scan this morning to see if her shunt is working properly. The scan showed that the pressure in her brain is still as high as it was on Christmas Eve (if not higher) indicating that the shunt isn't working as it should. Carly was admitted back to intensive care this afternoon so they could run a few more tests and a surgery time was reserved for her tomorrow.

There are two possibilities, either the shunt valve is not the right type for her or there is an infection somewhere in the shunt path. If the shunt valve is the problem, the surgery will be a relatively quick process to remove the current valve and replace it with one with less resistance. If there is an infection they will have to remove the entire shunt and treat the infection with antibiotics for a week before putting in a new shunt. We obviously hope that there is no infection, and based on Carly's other symptoms we think that this is likely. It is crazy to think that exactly one year ago today Christa was hard at work in a room only nine floors away from here and Carly was just over five hours away for gracing us with her presence. We continue to be blessed by her presence every day.

Love, Brad

Birthday Girl

It's hard to believe, but Carly is one today! We celebrated in her garden yesterday with friends and family and it was wonderful to see everyone and feel the love and support. Carly still isn't acting like herself so we are back up at the hospital to try to get to the bottom of this. We'll keep you posted.

Love, Brad

Thursday, January 8, 2009

The Guessing Game

We are settling back into a more normal (not in the hospital) routine now and Carly is doing pretty well. She had several mornings where she was clearly not feeling great but whether it was teething pain, a passing cold bug, adjusting to a lower (normal) pressure in her brain or a failing shunt is never clear cut as the first signs of all of these are pretty much the same. As you can imagine this really keeps Christa and I on our toes, and we continue to learn how to read the subtleties of Carly's reactions each day. It will sure be a lot easier when she can tell us what is bothering her!

We met with Dr. Gupta earlier this week as a post surgical follow up and to review her most recent MRI in greater detail. He is happy with how the shunt incisions are healing and commented on how good Carly looked. The tumor itself has grown a bit along the edge that was resected, but not enough to warrant surgery at this time. We will stick with the original plan of checking on the tumor every three months to determine when the next surgery will need to happen. Dr. Gupta said that he expected that this would probably be in the 6 to 12 month timeframe. In the meantime we will focus all of our energy on getting Carly stronger each day.

Love, Brad

Friday, January 2, 2009

Happy New Year!

We hope everyone had a great holiday season and ushered in the new year in style (whatever your style may be.) We have high hopes for good health and happiness in 2009.


Brad, Christa and Carly