Smiles

Carly is so happy to be home she can't keep her mouth closed when she smiles. She, Christa and I want to thank everyone for sending all the love.

Love, Brad

Home Sweet Home

There really is no place like home, and several sleepless nights in the PICU only makes that more clear. Carly was discharged earlier today and she is happily snuggled up with her mom on the sofa. It is a wonderful sight.

Love, Brad

Home On The Horizon

We are still in the hospital, but the end is getting near. Carly's IV was removed earlier today and now she is taking all of her medications orally so we can manage them when we are at home. Her sodium levels went up again early in the day but they seem to be back in control again. That is still the one remaining issue between us and home, but we are expecting to get the all clear tomorrow. Carly has already tried one new trick since the operation, her first mouth closed smile! It is as cute as her wide open mouth smiles and brightens our day every time. Thank you all for the love and support that has been coming our way. We are, as always, grateful to have such a wonderful support system.

Love, Brad

Can't Keep A Good Girl Down

Carly is feeling much better this afternoon as the effects of anesthesia and high doses of steroids wear off. She had only slept 30 minutes in over 30 hours and was definitely not feeling great but earlier today that started to fade and now she is acting more like herself. Her sodium level is now normal and she was taken off her IV drip this evening. They will be monitoring her ability to manage her sodium levels over the next day (or so) before we get the all clear to go home. We would obviously like for that to be tomorrow but just seeing Carly acting like her cute little self is enough to keep us happy.

Love, Brad

Merry Christmas

Carly is recovering well today, feeling a few effects from the anesthesia and some of her medications but certainly on the mend. Her sodium levels were a little high this morning but they are returning to normal now. We will see how she is doing tomorrow and perhaps we will be heading home, but that is still unknown.

Spending Christmas in the pediatric intensive care (PICU) wasn't something that we imagined in our wildest dreams but it provides real perspective on the important things in life. Carly is a little miracle and her incredible spirit is a constant reminder that you can never give up. Our family and friends both far and near continually show us the power of love to help lift each other up. And through these challenges I have been reminded of what I already knew, the best marriages are even stronger in tough times than they are in good times.

Love, Brad

The Pressure Is Off

Carly's surgery is over and everything went smoothly. She is in the PICU and we are waiting for her to wake up. Thanks for the prayers. Merry Christmas.

Love, Brad

Twas The Night Before Christmas

Twas the night before Christmas and I got a shunt? That isn't exactly how we planned to teach the story to Carly, but that is where we have found ourselves. Carly had an MRI earlier today to try to help determine why she hasn't been feeling well this past week. What we learned is that the pressure in her ventricles continues to be high and is now compressing her brain enough to lead to some of the symptoms we have observed. The pediatric surgical team determined that the risks of waiting longer outweighed the gains that Carly will immediately feel when the pressure is relieved. They have scheduled the surgery for 9:30 tonight and it should take 2 - 3 hours total. We will keep you posted.

Love, Brad

A Long Day

We logged some serious hours at the UCSF hospital today, getting there at 9am and not leaving until after 6pm. We met with a wide range of doctors all trying to figure out what is bothering Carly. She had another round of blood tests and most of the results looked normal. Her sodium continues to be high, and we will continue to try to boost her fluid intake. The endocrine team has increased Carly's hydrocortisone dosage for a little while to see if this can help make her feel better. To completely rule out any neurological issues Carly's next MRI will be moved up, if possible they will try to fit it in tomorrow.

We have had to cancel our travel plans to visit my family in Michigan tomorrow which is disappointing, but we know that we will all celebrate Christmas together in spirit. We are thankful for all of the prayers and positive energy that everyone is sending our way. Right now our little angel is sleeping peacefully.

Love, Brad

Never A Dull Moment

Carly seems to like to keep everyone guessing. Only two days after her ultrasound showed that she had 350 ml of fluid collected in the bump on her head, the bump started to shrink. By Friday of last week the bump was smaller than it has ever been since surgery and it continues to be that small today. (Can you say Christmas miracle!) At the same time that this amazing progress has been taking place, Carly has not been acting like herself. Her energy level has been really low and she has been napping a lot more than usual. These symptoms could indicate anything from a simple cold to something more critical so she has had several tests over the last few days to try to figure it out.

Ultrasounds have shown that there still isn't excessive pressure in her brain, a good sign that neurological problems can be ruled out. Her sodium level has been elevated, and continues to rise, in each of her last two tests which indicates that she is dehydrated. We have been trying to increase the amount of fluid that she is drinking and she will have another sodium check this morning to see if we can get that level to start to lower. It remains a mystery why she isn't acting quite like herself but we hope to get some clarity on that in the next few days. We know she will power through.

Love, Brad

Next up

Carly had an ultrasound last Monday and again today and both showed that her ventricles (the fluid filled spaces in her brain) are getting a little larger and the amount of fluid trapped in the bump on her head is also increasing. This means that she has some degree of hydrocephalus, where the absorption of brain fluid does not keep up with the production. It does not pose an immediate threat to her but it is something that will need to be addressed pretty soon. They have scheduled an MRI for January 6th to monitor the tumor and possibly give additional insight into the cause of the hydrocephalus. They have also scheduled a surgery for January 9th, barring a Christmas miracle, to put in a shunt which will act as a drain for the excess fluid in her head. Through all of this, and countless appointments, Carly continues to be unbelievably sweet and she is learning new things every day.

Love, Brad

Holiday Season

We got out the lights and Christmas decorations this weekend and had some extra help from a little Christmas elf.

Love, Brad

Twinsies!

Carly had fun tonight cuddling her matching doll, a gift from her GG (great grandmother.) Thanks GG!

Love, Brad

Time To Heal

Things are still moving in the right direction here at the Nelson house. In the past week Carly has had check-ups with physical therapy, occupational therapy, vision therapy and ophthalmology and they have all noted that they are seeing big improvements. She is doing a lot of smiling and particularly likes playing with her stuffed cat Pete (as in Purdue Pete.) The fluid on top of her head is still there in all of its glory, but it doesn't seem to be causing Carly any pain. She has an ultrasound tomorrow to check on her internal brain pressure to be certain that the fluid isn't harming her. If the ultrasound looks good, we will stick to the plan of waiting until her MRI in January to make a decision on the fluid. The best case scenario would be for the fluid to reabsorb on its own between now and then. We know she can do it.

Love, Brad