Tough night but hanging tight

We had a small setback last night as there was some fluid leaking from Cannon's incision which required them to give him an extra couple of stitches. That didn't go over so well with the little guy. After that, he actually slept pretty well thanks to the morphine and other pain meds. 

Right now, it's intense neck pain and headaches. If you feel the back of your neck - those two muscles that support the head - those had to be pulled way over to the side by his shoulders to reach the spine and back of the skull, so you can imagine how sore he is. Add to that the pressure of the fluid changes and he is pretty uncomfortable.

I can't thank everyone enough for the messages! Cannon had notes from Paris, Lebanon, Canada and throughout the US. He thinks it is so cool to see how people are praying for him and sending their positive thoughts. That is the one thing that seems to really engage him to get his mind off the pain so thank you!

He still is cracking jokes between the tears. Last night - he held out his finger with the oxygen sensor and said "ET phone home." We got a kick out of that.

More updates soon!

Great news!

All of your prayers and well wishes must have worked! We had a great post-op report!

Dr. Heuer came into the waiting room and told us the surgery went much smoother than he had anticipated. Last time he had surgery, you might remember that the doctors were concerned because his arteries were enlarged and this forced them to be more conservative in the procedure as he lost a lot of blood. This time - because he grew - and pressure has somewhat improved - those arteries had moved and presented no issues! So doctors were easily able to get to the area of concern, remove the scar tissues that had built up causing more pressure from the previous craniectomy. They were also able to open up the dura, which we hope will relieve pressure even more.

We are in the pediatric ICU (PICU) and he was awake when we arrived. His pain seems under control but as the meds we wearing off, we have our moments. He has a morphine pump and is still taking Valium to help with muscle spasms.

His incision looks great - the doctors here must have aced their needlepoint classes as I have never seen such small, intricate stitches.

The best part is his spirit has not been brought down at all by this. He still had all his wits about him -- and his sense of humor. Apparently during the surgery they removed his lower hospital pants. He did not like this at all! When we asked him how he was post-surgery, all he could say was "Where are my pants?" And when the nurse said, "ok anything I can get you?" He said, "Yes, pants!"

And... his hunger has already returned which really shocked us all (even the nurses and doctors!)

For now, the pain is at bay and he is sleeping peacefully. Cannon loves receiving messages so feel free to send videos or texts to me at 908-377-8700. I will read them to him and show him when he is up and feeling better. Thank you again for all your prayers!

The wait

I have never been good at waiting. And this has to be the worst possible wait.

The nurse just came out and told us that he's still being prepped. He went to sleep like a baby and they said he was "high as a kite" from the "giggle juice" (Valium).  I'm guessing the procedure will start around 9am - and then will take 2-3 hours. That is one..... long...... wait......

We are here in the waiting room. I can't grasp how some families are eating, smiling, laughing, listening to music. I sit with my computer and a box of tissues - oscillating between tears and gratitude and comfort from all of the texts and posts. I can't tell you how much we appreciate your love and prayers. We all feel it and it makes such a huge difference.  Thank you.

Cannon, conversely, has nerves of steel. He was as cool as a cucumber last night. Slept well, stole the covers, told me all the things he wants for his "post surgery gift", downed a rack of ribs, 2 Shirley Temples and even took a dip in the pool. He now has new motivation to get home as the proud owner of a new Playstation 4. It feels like an early Christmas to him -- and that makes me happy.

And the nurse just came over again to tell us he's doing ok - things are moving very slow. They just put in an A-line (arterial catheter) to monitor his blood pressure real time.

In the meantime, we sit and wait.

Ignorance is bliss...

Cannon has been doing so terrific that sometimes it's easy - and wonderful - to forget he has HPP. But just when I think I can take a deep breath, the rare metabolic bone condition rears its ugly head to remind me of the severity of this terrible disease.

A few years Cannon had surgery to relieve a skull malformation called a chiari malformation. You can read more about it in my post from March of 2013. In a nutshell, Cannon's brain extends beyond the base of his skull into his spinal column. The pressure caused by this condition has caused a large pocket of fluid - called a syrinx - to form in his spinal column, preventing the spinal fluid from flowing easily up and down his spine. While he has no current symptoms aside from a headache here and there, neurologists fear that without surgical intervention, he could have other neurological symptoms (including loss of feeling or use of parts of his body).

The first surgery was a chiari decompression surgery where brain surgeons removed a piece of bone from the base of his skull with hopes that this would help relieve the pressure and improve the flow of spinal fluid. Unfortunately, because the pressure was so high, they had to be very careful and conservative with this procedure, as Cannon had some arteries and veins that were supposed to be the size of hairs that were the size of a sausage. We are very blessed to have skilled surgeons at CHOP who knew that this put him at risk and made this decision on the spot in the OR the last time around. I could tell by the look on the surgeon's face the last time that it was not an easy surgery for him.

Cannon has since had followup MRIs to monitor the syrinx, which unfortunately has actually not decreased, but possible even increased, in size. Because of the continued neurological risks, we are going back for a second round of surgery - this time likely more invasive. An anatomical MRI seems to indicate that the veins and arteries that were swollen the first time have shrunken in size, making an intradural decompression surgery more feasible. The "dura" is the sheath that encases the spinal column. This time, surgeons will cut through this sheath to hopefully relieve the pressure within the spinal column that is causing the syrinx. Of course, I'm explaining this in the most basic of terms, but that is what we are dealing with.

Cannon had his pre-op appointment today - he did will for his vital signs, bloodwork and testing. Now, we wait until Tuesday. Please keep Cannon in your prayers and pray for his surgeons who will be performing this very intense procedure. We are comforted knowing that these surgeons are so incredibly skilled and talented. The last time we met with Dr. Heuer, he left our appointment to perform spinal bifida repair on an unborn baby in utero. Just incredible and amazing! He will be joined with the Head of Neurosurgery for this procedure, Dr. Storm.

More to come! Thank you everyone. <3