Surgery Update

Yesterday Carson had his surgery here in Texas. We got to the hospital at 6:00 am for pre-op and waiting in the holding area until Dr. Fearon arrived. When he showed up, he and the OR nurse noticed that we were tired, and told us that we could go back to the hotel to sleep until the surgery was done. That was so nice of them to do that since most of the time parents are required to stay at the hospital during the procedure. The surgery lasted 5.5 hours. We met again with Dr. Fearon in the parent’s waiting room after everything was done.

He said that surgery went very well. He said that Carson’s cleft pallete was a very difficult repair and that he was glad he was the one that performed the surgery. He said that even a doctor with cleft pallete experience would have had a challenge with it if they had not had a lot of experience with Apert kids. Along with separating the fingers and toes, Dr. Fearon also performed a tarsorrhaphy; a procedure where the outside corners of the eyelids are sewn together to narrow the opening of the eyes. He said that Carson’s right eye was about to herniate and that it was very good we did this procedure. All in all, the surgery was a success and Carson has been recovering well.

Dr. Fearon did mention a few times that he thinks Carson may require a shunt to drain off excessive fluid that is in his head. Dr. Fearon believes that the longer you wait to do a child’s first cranial vault surgery, that the fewer vault surgeries Carson would require in the future. He is considering placing a shunt to give us a little more time before Carson’s first cranial vault. Without it, we’d need to do the surgery in 2-3 months. The doctors ran an MRI last night and Dr. Fearon is meeting with us this morning to discuss the results. Hopefully it will show nothing needs to be done. If something needs to be done, then we have some big choices as to where and when we need to do it. More news on this later today.

Welcome to Texas

We made it to Dallas and today was our round of doctor appointments to get ready for Carson’s surgery tomorrow. Our schedule got changed up and we met with Dr. Fearon first at his office. We were very happy with our visit. He said that Carson has very good hands and feet and that the separation should be pretty straightforward. He also is going to perform Carson’s cleft palette repair at the same time. He suggested that he perform a procedure to sew the corners of Carson’s eyes together to prevent his eyes from popping out anymore. We decided that was a good idea in light of the last time that happened. So we are all set for surgery tomorrow at 7:30 am.

Dr. Fearon suggested that on our next trip that he would perform the cranial vault surgery. He is going to consult with the neurosurgeon tomorrow to make a final recommendation on that. It’s a little bit of a change for our plans, but we suspected that he would be going this direction. The rest of the day was spent getting registered at the hospital, taking pre-op x-rays, photos, and measurements. It wasn’t as bad as we thought it would be. We were impressed though, that every person we spoke to at the hospital commented about how great Dr. Fearon is as a doctor. Sweet.

Our time here in Dallas has been very good so far. The hotel that the Children’s Craniofacial Association paid for us to stay in is great. And our free flight on the American Airlines Miles for Kids in Need program was a huge blessing as well. We also had the security manager for TSA at the SLC airport open a special lane just for us when we went through security at the airport. On top of all of that, so many people have been so good to us financially (you know who you are). Thank you to all of you. It’s so nice to just be focused on Carson and his needs and not to have to worry about everything else.

That’s all of the exciting news for now, more to come tomorrow after the surgery.

We're Headed to Dallas

Some people are just so dedicated to posting new information on a regular basis. Unfortunately, I’m not one of them and I apologize for it. The last time I wrote, Carson we taking a trip to the ICU. Thankfully we are past that now and on to bigger and better things.

On a bright note, we’ve had few medical issues in the last 5 months. We’ve all been gearing up for our upcoming trip to Dallas for Carson’s first stage finger and toe separation surgery. The planning for this trip has turned out wonderfully. We received free plane tickets from American Airlines through the Miles for Kids in Need program. We also were awarded financial assistance for our hotel and food while in Dallas. My dad (Steve’s Dad) has been working in the background this whole time ironing out the fine details for travel. We will be getting private screenings at the airport here in SLC and in Dallas thanks to his efforts. We decided not to rent a car while in Dallas to save some money (the hotel offers free shuttle service to the hospital). We will be using a car service to get to the hotel from the airport also. We’re still waiting to hear about getting a portable oxygen concentrator for the plane ride (that situation could be a whole post in itself). Aside from that, we’re all lined up and ready to rock.

Carson has been growing and learning a lot lately. He can roll over now; front to back and back to front. He’s also done very well holding himself up on his arms while on his belly. His most recent trick is to mimic us when we smack our lips at him. He’s also found it enjoyable to “talk” to us. I’m not sure how he does it, but he’s found a way to force the air around his trach and make quacking noise out of his mouth. We call him our little duck.

It’s been a very difficult 10 months here in our home. There are so many adjustments that come with having a child with a trach and Apert Syndrome. Really, Apert isn’t all that hard to work with, aside from the doctor and hospital visits. It’s the trach that has been wearing us down. So much to do to keep him protected from illness and so much work to care for it. We look forward to the day he gets it taken out.

So we’re off to Dallas next week, as far as we can tell. Everyone here has been battling colds and fevers and our sitter for Avery (my mom), just broke her ankle two days ago. We could use some prayers that this all works out. At least we don’t have to do this again…..um….well only two more times this year. The first time is always the hardest, right?