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?

Which Way is the ICU?

Well Carson missed the hospital so much that he decided to take another trip back. Friday morning our night nurse let Heather know that she had to put Carson on oxygen during the night to keep his O2 sats up. This was a little surprising to us since Carson has been off of oxygen for a few weeks now. Heather asked the nurse if Carson had a fever or anything, but she said that his temperature was normal. Heather decided to take it again and found that he had a 99.5 low grade fever. In the 10 minutes or so that she was talking to the nurse, Carson’s oxygen sats dropped to 83% and he began to breathe very labored.

Heather called in to Carson’s primary care doctor and got an appointment for the afternoon. (It would have been sooner if they would have called back sooner!) When they got to the doctor’s office, Carson was put on their monitor and his heart rate was around 170 bpm resting (it’s usually at 130). Tony, Carson’s doctor, gave him a breathing treatment to see if it would help his labored breathing. It didn’t help much so he told us that we would have to admit Carson to the hospital. We decided to take him down to Primary’s since that’s where all of his care has been in the past.

When we got there we were put right into a room because his doctor called ahead and got a room set up for us (his doctor is so nice!). Once he was in the room, it quickly filled up with doctors and nurses and respiratory therapists. They tried to give him so more breathing treatments, but those didn’t help. They did a blood gas analysis and found that he had a high level of CO2 in his blood. He was moved to the pediatric ICU after that and was greeted there by a whole mess of doctors and nurses. He was put on a CPAP (Continuous Positive Airway Pressure) to help open up his lungs and get him to breathe off the CO2. When Heather and I left Friday night his heart rate was still very high and he was still very labored in his breathing.

We visited Carson again on Saturday night and he look a little better. He was awake and was sucking on his fingers like he does at home. They were still giving him breathing treatments and monitoring an on-again / off-again fever. We left that night hoping that he might be improving and home around midweek.

At 2:30 am Sunday, we got a phone call from the hospital. The nurse told Heather that everything was ok and that Carson was fine, but there was some trouble. Carson had gotten a plug in his trach and his O2 level dropped low and caused his heart to slow down to 30 bpm. They had to give him CPR and use a resuscitation bag on him to get oxygen into him and to get his heart beating faster. He made it through it but it sure gave us a scare. When we went to the hospital to see him on Sunday he looked worn out. He slept for our whole visit.

On Monday Heather went up to the hospital and was told that they had put Carson on a ventilator. They had switched him from the CPAP to the vent on Sunday, but what they told Heather was that Carson was very weak and was having trouble breathing on his own. So they turned on more of the controls on the machine to help him breathe. He was still sleepy on Monday.

Heather called the hospital today and Carson’s condition hasn’t improved or worsened. So, hopefully he’s working through the thick of it right now and will start improving soon. They are going to be putting a feeding tube down Carson’s throat and into his intestines. The ventilator has been pushing some air into Carson’s stomach and they need to vent that out. So as long as he’s on the vent he’ll have the feeding tube. His CO2 levels are still high but they aren’t too concerned about it right now because his PH level is ok.

So things are a little wild right now with Carson in the hospital, our plans for moving, and life in general. But we’re doing ok with all of the support that we have here.

I'm Back

It’s been a month and a half and I’m back to updating the blog again. I had to take time off to finish up my schooling from the spring semesters. I’m sure you’re wondering how I did; don’t worry, I’m wondering the same thing. I know for sure that I passed my computer science class with an A. Now math on the other hand might need to be retaken. Let’s just say that I lost interest in remembering it after Carson was born. So on that note, let’s talk about him and get the scoop on what’s happened over the last six weeks.

Surgery: Carson had his two inguinal hernias fixed two weeks ago. While they had him under they also circumcised him and had to descend his testicles (a common problem with the omphalocele). Everything is in the right place now and he’s healing very well since the surgery. At that same time he had an MRI of his head taken to look at the size of his ventricles in his brain and to check for a Chari malformation. Dr. Fearon spoke with me this week and said he was very surprised by the MRI. Everything looked great! His ventricles were average size and there was no Chari. We’re really happy about that; we treasure all the good news we can get.

Carson is off oxygen! He’s also been using his synthetic nose that goes on the end of his trach during the day, and then goes back onto humidified air at night. That means that we get to turn off the compressor during the daytime! Peace and quiet never sounded so good. Carson has been spitting up his feedings quite frequently also. We tried a number of things from changing his feedings to upping his medicine, to giving him less formula powder mixed with the breast milk. Nothing was working and we were fearing that Carson would need to have a nissen (a permanent surgery done to the valve at the top of his stomach; just google it, I’m not an expert). Heather, the good mommy that she is, has found out what is really bothering him. Frozen breast milk. Good thing that we don’t have a 5 cuft freezer downstairs that is full to the brim with it. So she has been giving him fresh milk and the spitting up is gone. I’m kind of surprised that our doctors missed that option.

Last month Dr. Fearon told us to expect for Carson to have his cranial vault surgery first, to fix the fused and separated plates in his head. He has since changed this because of the good results from the MRI and now wants to proceed as normal; fingers and toes first, head last. He said that that schedule will still depend on how Carson’s 6 months prictures look. Dr. Fearon said that he wants to wait as long as possible (not past 15 months) to do the vault. He said that because of Carson’s tall, skinny head, that he may not be able to wait that long because once the head gets too tall, it’s hard to get it back down into a normal shape. We’ll see what happens with that.

My dad (Stephen’s dad) has been working very diligently at finding donated transportation for us to get to Texas. Originally we had planned on driving down there all together, but a cheaper option would be to send Heather, Carson, and I down to Texas while my parents watch Avery here in Utah. (That way she gets super spoiled by Grandma Kitty and Grandpa Moose.) So far we have many very good options for free flights ranging from commercial flights from AA, to using private planes and corporate jets. I never realized how generous people are when it comes to children.

Carson is moving into his own bedroom tonight. We decided to move him out of the living room since he doesn’t need to be on the monitors during the day. That way, we can treat him more like a normal kiddo with regular nap times and so on. We have noticed that he sleeps a lot. We’re going to be talking with our pediatrician more about that this week.

Well I’m sure Heather will read this and tell me that I left out a ton of information. So plan on another post soon with all of the odds and ends. Until then…

Full Steam Ahead

Carson is home!! Well, the truth is that he’s been home for two weeks. If you couldn’t tell already, this has drastically altered our free time, which in turn has impacted the frequency of blog updates. But have no fear! I’m going to at least try to put out an update once or twice a month. I mean really, do you guys want to read about the daily routine of cleaning up spit up, suctioning the trach, checking the consistency of Carson’s poop? I didn’t think so.

So what’s new? Well Carson is doing great at home. He’s gained 5oz since he’s been home. He’s been able to be weaned down to 1/8th of a liter of oxygen. We’re hoping he’s off that soon. That way he may not need to be hooked to his monitor in the daytime and it’s one less thing that we need to pack around. We’re looking toward a surgery in the near future to repair his inguinal hernias. That’s right, it’s plural; he’s got two. We’ll find out the date for that this month.

It’s been three months since Carson was born and that means we get to take pictures to send to Dr. Fearon in Texas. We’re going to get the date of our first surgery scheduled so our families and friends can plan for it. One huge blessing is that my parents (Steve’s parents) have offered to drive all of us down to Texas for all of Carson’s surgeries next year. What a relief to know that Avery will be able to come with us and will be well spoiled, um, I mean well taken care of.

We do have a night nurse in our home at night for 12 hours each night. It was a little touch in go at first with our nursing company. They sent us nurses that had no experience with trachs. We were able to get everything worked out now and we have more experienced nurses in our home.

We’re doing as best as can be expected as a family. We’re pretty home bound since one of us always has to be with Carson and if we do go out, it takes a lot of prep work. We have some problems with Carson’s heart and oxygen monitor not holding a charge long enough. So we’re getting a new one and that will allow us to go out together. So far, we’re all still sane and alive, which is good.

A New Way of Life

We spent last Saturday at the hospital and did our “room in” with Carson to show everyone that we are capable of taking care of him. We got to the hospital at 10:30 am and stayed until 7:00 pm. We were put in a private family room and given some times for when we needed to do our “cares” for Carson. We found that he needs to be suctioned often when he is awake, but not much when he is sleeping. He also let us know that he doesn’t like to have his diaper changed. Everything went really well and Heather and I feel capable of taking care of Carson by ourselves. We’ll just see how things go when we get him home. It will be a big adjustment for us, but it will be very good for Carson to be at home.

We’re gearing up for bring Carson home sometime this week. We’ve run into a few snags with paperwork getting from the hospital to our insurance so it’s delayed his departure. We were thinking Wednesday or Thursday, but our insurance told us that even though they can approve the night nursing by Wednesday, that it will take some time for the nursing company to get that info and get nurses lined up for Carson. So we’re not totally sure what day that will be now; hopefully still this week or this weekend.

Carson’s room is starting more and more to look like a hospital. On Saturday the home care company brought us his oxygen saturation and heart monitor, his feeding pump, and his suction machine. We’ve also got an IV stand and will be getting a humidifier machine and oxygen tanks. UPS delivered three large boxes of medical supplies full of stuff to take care of Carson’s trach. We’ll also be getting supplies for his g-tube and other odds and ends that we requested from the home care company. It’s all a little overwhelming, but we’re hanging in there.