Back Again?

You're not going to believe it, but we are back in the hospital once again. Last night we noticed that the dressing on Carly's shunt incision seemed damp and later in the night it was clear that CSF was leaking through the suture holes of the incision on the back of her head. We spoke with neurosurgery first thing this morning and they admitted her around 1pm. Dr. Gupta is coming in to perform another revision on the shunt later tonight. They will inspect all of the components and replace anything that may be faulty. They will also take extra care to ensure that the shunt has a water-tight seal where it exits her skull. We continue to visualize a healthy and happy Carly at the end of all of these surgeries.

Love, Brad

Where There's A Will There's A Way

We are back home again which is always a relief for all of us. We are lucky to live this close to the hospital otherwise I am sure we wouldn't get out so quickly. Carly is definitely in more pain than her previous surgeries but she is dealing with it remarkably well. She napped most of the day and we're hoping that she can get back to feeling like herself over the weekend. The shunt seems to be working properly now and we are going to will this one to do the trick for her.

Love, Brad

Pain In The Neck

Carly really is a remarkable little girl. This surgery/recovery has been the most painful for her and she needed a lot of medication to get through the first night but she is already bouncing back, happily looking at books with Christa as they lay on the bed together. Because Carly's belly wasn't absorbing the CSF from her shunt they redirected the drainage to a vein. They planned to use a minimally invasive technique to place the drainage tube into a minor vein but they were not able to pass the tube successfully so they had to use a more invasive approach placing the catheter in her jugular vein. (The catheter runs from here to the entrance of her heart where it can drain the fluid directly into her bloodstream.) This required an incision, cutting through the tissue and muscle in her neck for careful placement of the distal end of the shunt which is the source of the aches and pains that she is dealing with this time around. She is recovering well now and it should heal completely in the next week or so.

Carly is going to have a MRI in a few hours to get an updated image of the tumor to assess how quickly it is growing. Because she has to hold still for an hour or two while the images are taken she will need to be placed under anesthesia for this, but we are hopeful that after she has recovered from the anesthesia she will be allowed to go home. We really appreciate all of the messages that we have received in the last few days, it really helps power us all through this.

Love, Brad

Another One Down

Carly is out of surgery, doing well and recovering in the PICU. Dr. Gupta said that it was a little more challenging placing the drainage catheter than anticipated, but everything worked out in the end. We will spend tonight in a tiny little recovery area, but hope to be moved to a real room tomorrow. Thank you for the prayers and loving energy.

Love, Brad

Bath Bunny

Carly passed her rainy Sunday with a morning bath snuggled in her bunny towel followed by some good cuddling with her parents. Her electrolyte levels are back into normal ranges and she's as cute as always.

Love, Brad

She'll Get There Eventually

It's been an eventful few days as we try to unravel the most recent Carly mysteries. The night before her belly tap, Carly spiked a fever of 104 degrees which was concerning. With a stress dose of hydrocortisone, Tylenol and cold washcloths we were able to get it back to a normal range, but we were up every hour or so through the night to make sure the fever didn't return. Her tap on Thursday went smoothly, and they removed almost 500 mL of fluid once again. Cultures of the CSF from the tap have not shown any signs of infection yet, so it looks like she may be in the clear with this potential complication.

These recent issues have knocked Carly's electrolyte levels out of whack, leading to many blood labs and questions from the endocrinology team over the last few days. They wanted to admit her to the hospital last night and again today to closely monitor these levels but we talked them out of it, promising to take her in for another blood lab tomorrow. Carly is scheduled to have her third shunt revision surgery with Dr. Gupta on Tuesday and he will likely replace all of the shunt hardware with hypo-allergenic versions, and the shunt drain will be routed directly into a major artery, rather than her belly. This will allow her belly to recover from its inflammation and hopefully give Carly some time of uneventful peace and quiet.

Love, Brad

Soak It In

Carly had an ultrasound today to see if her belly started absorbing the CSF after her tap last week. Her stomach was looking a little bit distended so we were concerned that the fluid was re-accumulating, and the ultrasound proved that to be right. They are still unsure why this is happening but they think that either she is allergic to the coating on the shunt tubing, or her peritoneal space (the area around her stomach) just doesn't have enough surface area to keep up with the amount of fluid that her head is producing.

The next step is to try another round of tapping her belly followed by a course of steroids to try and reduce any inflammation that could be inhibiting her ability to absorb the fluid. She will have the tap on Thursday and another ultrasound early next week to see if this works. If the fluid returns, the next step would be to admit her to the hospital and have the shunt drain externally for a week or so to give her belly a rest. They would then replace the shunt with one made with a material that is less likely to cause an allergic reaction (which is very rare in the first place.) We are really hoping that one of these steps solves the problem as the next option has a lot of new potential complications and would require revision surgeries every few months. Through all of this Carly is still doing remarkably well and she looks as cute as a button now playing with her toys as she rocks out to some music. All three of us send our love and thanks to all of you.

Love, Brad

Tap In

Carly was up early today and we headed to the hospital for a belly ultrasound and a tap to remove the fluid that is accumulating in her abdomen. The procedure went smoothly, she recovered pretty quickly from the anesthesia and we are back home again. They removed 450 ml of fluid, nearly a pint! As you can imagine, having a pound of fluid removed from her belly is a big relief for her.

The initial results from the culture of the fluid do not show any infection. It will still take several days to know for sure, but it is looking like this is probably not the problem. It is still a bit of a mystery why she is having the fluid accumulation and the ultimate solution may be a different catheter location that drains directly into an artery instead of her abdominal cavity. This would take another surgery of course, so we are hoping that there is an easier fix. Carly should have many days of relief from this tap which will give the doctors some time to determine the next steps. Thanks for all of the prayers and kind words, it is comforting knowing that we have so many wonderful people supporting us on this journey.

Love, Brad

Belly Up

There are still no signs of infection in the fluid that they drew from Carly's shunt which is good news. Her belly is sticking out pretty far though and there are no explanations why the fluid from the shunt is not being absorbed in her abdomen. Dr Gupta decided that he would like to tap her belly and collect some of the fluid to make sure there is not an infection localized there. He will tap it either Wednesday or Thursday and although it is an outpatient procedure Carly will need to be anesthetized while they do it. Carly is still in a good mood most of the day, and her smile can brighten anyone's spirits.

Love, Brad

Mostly Ups With a Dash of Downs

Carly continues to do well, smiling a lot and eating a lot of new solid foods. She particularly likes oven roasted sweet potatoes and high fat Greek yogurt with some fresh fruit. Her therapy has been focusing on helping her regain normal use of her right arm, and while she still has a way to go we have definitely seen improvements over the last week.

On the down side, each night around 3am Carly has a half hour session of screaming and it is clear that something is hurting her. We had been thinking that it was teething, but in the last few days it is looking like it may have something to do with her shunt. We took her up for an ultrasound check today and they found that there is excess fluid in her belly (where the shunt drains.) This could indicate that she has an infection or an allergic reaction to the shunt itself so they tapped the shunt (like taking blood, but the needle goes into the shunt instead of a vein) to get some fluid for testing. The initial results do not show an infection, but they will need to continue to culture it for seven days to make sure. Fortunately Carly is feeling well for the other twenty three and a half hours of the day and we're hopeful that the solution to this most recent issue will be an easy one for her.

Love, Brad