Friday, March 30, 2012

MRI and Surgery Dates + Chiari Malformation?

The dates are not official yet, but we are looking at the following:

Monday, June 25: MRI and office visit with Dr. Tuite in St. Petersburg;
Tuesday, June 26: Surgery with Dr. Tuite and Dr. Ricalde at All Children's Hospital in St. Petersburg.

I think that we will be able to stay at a Ronald McDonald House there, as we will end up being in St. Petersburg for most of the week.

The MRI is being done to check for chiari malformation. If that shows up, then treatment for it may be needed. I probably won't do a whole lot of reading on chiari unless the MRI shows it, as I understand that the way it presents itself can vary wildly and will just cause me to worry.

Wednesday, March 28, 2012

An Unexpected Blessing

My mind was consumed yesterday with figuring out how to manage the back-and-forth trips to St. Petersburg in the coming weeks, and I came home to an unexpected blessing. A "Thinking of You" card had come in the mail from a family member, and inside the card I saw money orders for decent amounts. I was in a bit of shock, and I think that my jaw is still on my kitchen floor. When hubby came home, he asked if I saw the card; and he indicated that he, too, needed to find his jaw somewhere on the kitchen floor. We are very grateful for the gift, and I know now how we will manage the trips to St. Petersburg. Hotel accommodations, gas, mileage, and meals will no longer be a source of stress. Thank you so very much!

Monday, March 26, 2012

ICP? Other kinds of pressure!

We are no strangers to ICP. To start, Simon obviously had it before his first surgery at 6 months of age. How else would you explain everything going on? He had a voracious appetite but fell off the charts for weight. He had to be held constantly. He would not sleep on his back. He was diagnosed with hypotonia (low muscle tone) and significant developmental delays. I felt like I watched my baby wither away before my eyes in the days leading up to the surgery. After the surgery and recovery, he started physical and occupational therapy; and we ramped up his diet. Baby boy just took off from there!
Then, he obviously had it before his second surgery at 4-1/2 years of age. His skull bones opened up and became like swiss cheese. His speech and hearing were affected. His sleep was horrible with sleep walking, thrashing, and moaning all night every night. His behavioral quirks really had us thinking that he was on the autism spectrum. Then, after the surgery, everything improved. He does wear hearing aids for sensorineural loss, and he still receives speech therapy twice a week. His sleep is not perfect. Still, everything got immensely better.
So, we have been through it. He never had the vomiting or the optic nerve pressure or the inconsolable crying or other symptoms they had us monitor, but he definitely suffered. You would have never known it, though. He is such a happy kid!
Knowing all this, maybe there is some clarity as to why I felt like I got punched in the gut when the craniofacial surgeon mentioned getting an MRI to check for ICP and requested axial slices of the brain from the CT scan in order to check the size of the ventricles. We have been through it enough times, and this time around the only thing observed is the growing soft spots. He seems to be doing great otherwise. Or is he? Am I missing something? Could my baby be suffering in some way that I do not see yet? My mind is whirling with not-so-good possibilities, and I don't really want to entertain any of them. For now, I just want to get through the surgery. But, are they doing the right thing? Do we just need to cover holes, or is it possible that a reconstruction is needed again? There are too many unanswered questions!
In the meantime, I feel so sad. I look at him, and I try to soak in everything. Even though he has gone through all of this like a champ for 7-1/2 years, I still want to take it all in just in case. The reality, even if we do not reveal it in conversation, is that our baby has to go through something so serious, that papers are signed agreeing not to blame the surgeons in the case of death. I will never get used to that. I will downplay this next procedure as a relatively minor one compared to the last, but note the word relatively. I will talk about it in cool, clinical tones so that I can avoid choking up. The last thing that I have the time or energy to do right now is break down. Then again, I may reach a point where I am by myself and can risk doing so. I won't do it in front of anyone, though. Nothing they can say or do will bring comfort, and I do not want to add to their stress. Still, people need to know that most of what is going on day-to-day around me seems laughably trivial. Facing your child's mortality gives you that sort of skewed perspective.

Sunday, March 25, 2012

CT Scan Images

Here are the latest CT scan images of Simon's skull. If you get squeamish with these things, I want to warn you to move on to a different post or a different site. It is just a computer image of the bone, but some people get the heebie-jeebies when looking at this sort of stuff.






Don't say that I didn't warn you!






Here, you can see the infamous soft spot on the right side. Every time I look at him now, I see this thing pulsating. Immediately, I feel sadness and worry. What if he gets hit there? Why in the hell do we have to put him through another surgery?!



From the front view, you can see that he has soft spots on both sides. The one on the left is smaller, but I can see it pulsate too.



Here's the one on the left in all its glory.



You can see right through to the other side! Well, not really, since he has skin and brain there, but the picture reinforces what is going on.



There are some small holes on top, but the neurosurgeon is not too worried about those. There used to be a plateau that ran across Simon's head there, due to the shape of the bone at the last CVR (Cranial Vault Remodeling). They had taken off the skull cap and flipped it back around so that it was oriented the same way that it had been before his first surgery. This gave his brain some room at front where it was previously getting pinched, but the bone did not fit together perfectly. Over time, that has smoothed out. It is not perfect, but it seems to get nicer every day.



So, this is what they have to fill. They hope to take bones off the sides of the skull, above the ear. That is where the skull is usually thickest. If they do a split bone graft, then the bone pieces will be cut like an Oreo cookie and fitted over the holes. Everything will be held together by absorbable plates and screws.




We don't know if he will need a blood transfusion this time around, but I plan to be prepared anyhow. The surgery will not be as invasive as past surgeries, but cutting and peeling back the scalp can be a bloody affair. Plus, you just never know what they will run into once inside.

The Craniofacial Surgeon Report

For this latest stage in the cranio journey, we had visited with one of Simon's original neurosurgeons to bring up the concerns, and we ended up seeing the craniofacial surgeon that is now on that team. Both surgeons want to cover the holes in Simon's head, but they had differing opinions on what materials to use. The craniofacial surgeon talked about using a bone material consisting of bone chips, and the neurosurgeon talked about using a bone graft. Both talked about doing it this summer.

Last Friday, we visited Simon's original craniofacial surgeon, and she concurred with the neurosurgeon on doing a bone graft this summer. In Simon's case, it will likely be best to go in expecting to do a bone graft but also being prepared to use titanium mesh. For the last surgery, not enough bone could be harvested for a full cover, and nothing guarantees that enough bone will be available this time around either. The titanium mesh will cover and protect, whether or not there is enough bone.

I asked about why we would do this versus bone material or PEEK implants. If Simon's holes were bigger, we would have to consider implants, as the titanium would bow in the middle. Since the holes are smaller, we can use the titanium, which has been in use for many years and has an excellent track record. Plus, the titanium is tough and durable to protect his brain. The implants have risks into adulthood, including the possibility of coming loose. The titanium doesn't carry the same risks. We will avoid the bone material/bone paste, because it did not stick when used in the last surgery.

Another question I asked is why should we bother to do this at all? Why not just continue to wait and see? More than likely, the holes will continue to grow, and the opening on the right is a safety issue. This summer is a good time to get it done. He needs a good 6 weeks to fully recover and stay away from the germ-infested kids at school, and he needs to have that noggin in good shape as he gets old enough to do more physical activities.

During the visit, the CT scan disk would not cooperate in the office computer. So, I figured it out at home a few days later and sent the pictures to the craniofacial surgeon. Her response, although not entirely unexpected, still felt like a punch in the gut. From those pictures, she could see that the holes have definitely gotten bigger. She sees two things that need to happen: 1. The holes need to be covered; 2. We need to find out why they are getting bigger like that. She requested that I send some axial slices from the scan so that she can look at the size of the ventricles, and she is talking to a neurosurgeon about possibly ordering an MRI to rule out ICP (intracranial pressure). At the moment, all kinds of things are running through my head, and none of them are good. I will save that for a later post.

The neurosurgeon is Dr. Tuite out at All Children's Hospital in St. Petersburg. This time around, we may end up there so that we can have the same craniofacial surgeon along with a personable neurosurgeon. For those of you who follow the story of Jorge Posada's son, Dr. Tuite was on the team that operated on Jorge Luis at All Children's when they were here in Florida. I hate the idea of having to go to a different city and have a new neurosurgeon, but circumstances have changed, that require us to make decisions about where to go and which part of the original team to use. I am confident that God will guide us to the best place, as He always does. Simon seems to have some extra spiritual protection in everything that he endures.

Friday, March 9, 2012

Time to start posting again...

I was able to take a good hiatus from posting here, as we had paid off the bills from the second cranio surgery and had purchased the hearing aids. Life was humming along with speech therapy at school, leaving us little need to think about that service. The only real upheavals involved routine checks with the ENT, audiologist, and ophthalmologist. I started noticing openings a while back, though. A CT scan and visits with the surgeons in Orlando confirmed what I was noticing and fearing. Then, a visit to the surgeon in Tampa, today, confirmed that fear. Here is what I put on Facebook.
Simon does need the openings near his temples to be covered. The plan is to go in, harvest bone, and do a split bone graft. If not enough bone can be harvested, then a titanium mesh with bone may be used. If we leave it alone, the openings, especially the right one, will likely get bigger. Also, it is a safety concern. If we have the same craniofacial surgeon, then we will probably end up at All Children's Hospital in St. Petersburg. We should be able to get a room in the Ronald McDonald House so as to be there a day or two early for pre-op testing. He really needs six weeks out of school to get past the danger zone of contracting any post-op infection. I am taking the second summer term off, and Chris and Simon will already be on break. So, that works out okay. The neurosurgeon does the bone harvest, and the craniofacial surgeon puts it all together. So, I am thinking that we will be taking the trip to St. Petersburg. That will be eerie. It will be 35 years since I had my cranio surgery at that same hospital!