Sleep Study

Tonight, John and I will be spending the night at Texas Children's for what will be something like his 15th sleep study. And if everything goes well, it could be his last. In the early years, we thought of sleep studies as being very important. Each time he had one, we thought it could mean his last. But after being disappointed over and over again, we came to think of them as just another hurdle on this journey. We stopped getting our hopes up and started to think that he would never be able to get his trach out because of the apnea. We came to realize that the apnea is not going away completely. Yes, it has gotten significantly better. At one time he was having 100's of apnea episodes an hour and as of his last study, he was having only about 5. Praise the Lord for that improvement. But it is unlikely that he will ever be completely rid of the apnea, although not impossible. We know that nothing is impossible for God and if he decided to, he could completely take away the apnea tonight. But we do know that for the last 4 months, John has slept without ventilator support and without oygen support. We have gotten our hopes up again, and tonight is one of those important sleep studies. We have to be at the hospital at 6:30 this evening, and will spend the next hour and a half or two hours getting him all wired up and ready for the study. I will stay over night with him and Tommy will come home. After what will surely be a restless night for me, we will start packing up around 6am and head home. If all goes well, and the doctor feels that he is still capable of getting enough rest without ventilator and oxygen support, we could begin the steps of decanulation (removing the trach). This will be about a 2-3 week process. It will be at least a week before we get results back, so we are looking at the possibility of decanulation sometime in July. But again, that is us being optimistic. It could in fact take a little longer, or it could be decided that he is not ready. Please pray for our family as we go through this process. Most importantly, we want God's will to be done. If it is God's will, then we are more than ready for the trach to come out. Pray that it will be absolutely clear to the doctor which way we should go. Everything with John has been a borderline decision his whole life. This one time, I want it to be clear. I certainly don't want the trach to be removed if he is not ready. Also pray for us tonight. I don't dread the restless night as much as I dread the getting ready part. It is such a tedious process to get all of the electrodes and wires on him. Keeping him still for that long is impossible. And lastly, pray for Tommy and I to maintain strength and peace of mind no matter what the outcome of this sleep study is. Each day is a new challenge. Thanks again for all of your prayer and support over the years. It is through your prayers and God's grace that we have made it this far.

Lucky 7!

Exactly one week ago tomorrow, our sweet baby boy turned 7 years old.  Really?  Has it really been 7 years since we were admitted into the hospital to give birth to this little guy?  Has it really been 7 years since I heard the words "It's a boy" at 9:14 am?  Where has the time gone?

As I wrote about earlier, we had a small get together the weekend of Mother's Day to celebrate with our family.  We decided Saturday would be a great time to celebrate with our friends.  It's always hard for me to decide what kind of party to have for him.  Most of the typical kids parties are out of the question for us because I kind of refuse to have a party that John can't participate in.  I don't do fun jumps because he doesn't like them.  That also typically rules out any kind of indoor inflatable place. The first two years, we invited so many people that we had it at a nearby park.  We reserved a pavilion for a couple of hours and grilled hamburgers and hot dogs while the kids played on the play ground.  One year we had a backyard party after we got John's swing set.  One year we used the indoor playground at our church.  And last year we went to the Little Gym in Katy.  They all were good parties, and John was able to participate minimally.  This year, we decided to do a backyard water party.  I think Tommy was a little skeptical at first, but it actually turned out to be a blast.

We borrowed two blowup water slides from two separate friends.  We put a slip and slide down and we blew up a small pool.  The pool was more for John, since that would be the only part he could participate in, but we found out that all of the kids enjoyed time in the pool.  Of course we also had the swing set.  That was put to good use as well.

I felt really unorganized this year and a week before the party, I still didn't have an idea for a cake.  The theme for the party was sock monkeys (surprise surprise) and I really wanted to try and have some kind of sock monkey cake made.  During a casual conversation with my neighbor, I somehow ended up enlisting her to make cupcakes for me.  Now that it was decided that she was making cupcakes, the search was on to figure out what kind.  It took us several days to finalize the details.  We decided it would be easier to make cupcakes with chocolate icing and to put toppers on them to go with our theme.  So I went online to the website Etsy, and found someone who was selling cute sock monkey cupcake toppers.  I paid her for the file and I was able to print out as many as I needed.  I have to say that it if wasn't for my very creative and helpful neighbor, there may not have been cake of any kind at the party.  She baked and iced all of the cupcakes and she cut out and put together all of the toppers to go in the cupcakes.  She even put together the party favors for the kids.  She definitely wins neighbor of the year award for that.

The party was a huge success.  We grilled burgers and hot dogs and of course had cake and ice cream.  The kids had a blast playing in the water.  I got in the pool with John and he splashed around for a little while.  Then I got him changed into dry clothes and Tommy took him to swing.  Even a few of his teachers from school showed up.  We almost weren't able to get the kids out of the water long enough to eat and open presents.  It was definitely one of the best parties we have put together.  We just might have to make it an annual thing.  Hopefully he will be getting his trach out this summer and next year he'll be able to play more in the pool and some on the slides.

We asked one of our friends if he would bring his camera to the party and take pictures for us.  He did an excellent job.  Go to his website, http://curtislawson.smugmug.com/ and check out his work.  And you can follow the following link below to see pictures from the party.  We are looking forward to another great year with our boy.  Hopefully next year, we'll have even more to celebrate.

http://curtislawson.smugmug.com/Families/JTs-Birthday-Party/

Heart to Heart

I think the last place we left off was right about the time when the MRI was cancelled because the anethesiologist wanted John to have an echocardiogram before he would sedate him for an MRI. I was pretty perturbed about it because I knew he would have a hard time lying still for the echo. But they wouldn't sedate him for an echo. On Tuesday, Caitlin and I (our wonderful summertime nanny) picked John up from school at 1:00 and heading down to TCH to attempt a nonsedated echo. I thought we might be there a while, because my own experience is that echo is behind A LOT. But we didn't wait long at all before they called us back. We got in the room and layed him on the bed and took his shirt off. The first thing he did was put his hands behind his head. That is his sleeping position. Every night, when we put him to bed, he immediately puts his hands behind his head. I then noticed that his diaper was wet and he had wet through his shorts. So I went ahead and changed him and decided to leave his change of clothes off until we were done. So he was layed out on the bed in nothing but a diaper, and he loved it. He wouldn't be a boy if he didn't. I have to say that I thought he did exceptionally well. He never once tried to grab anything, or smear the goo they put on his chest. He did figit a lot and moved his legs around and even bounced his rear end up and down on the bed a few times, but I was pleasantly surprised with how well he did. Finally we were done. So we got him dressed and ready to head home. On our way out, I decided to pop into the pacemaker lab and say hello to my favorite nurses. Isn't it funny that both of them are named Melissa? Anyway, they asked if I had his holter results yet and I said no. So she looked it up for me and said that it was one good looking holter. He had primarily sinus rythmn, no arrythmias and nothing abnormal. She is not used to seeing a holter that good from someone with the last name of Hitt. I called Tommy on the way home and told him that I thought John had done exceptionally well, and he said now we have egg on our face since we made such a big stink about him being sedated for it. The next day, Dr. H called to give me the results. She said that just as I predicted, he had a hard time being still. Really? I thought he was as still as he's going to be and still be awake. I guess we didn't have egg on our face after all. She said that because he wasn't as still as necessary, it wasn't a complete study. But they were able to confirm that there was no hypertrophy and that he would be okay for sedation for the MRI. I'm glad that he had his heart cleared, but at the same time I'm quite frustrated because I knew there was nothing wrong with it and we should have had the MRI done already. Now we have to wait 2 weeks before we get it done. This has been quite the process, but I'm glad our Dr. H is being thorough. On a seperate note, this blog is brought to you courtesy of my iPad. No, the iPad isn't new, but the way I'm typing is. My wonderful husband though that a good Mother's Day present for me would be this nifty iPad case. It is called a Zagg. The case comes with a place for two things. On one side, you put your iPad and on the other, you can put an actual keyboard. And the keyboard has a little ledge where you can prop your iPad up and then are essentially using it as a lap top. A very small laptop. I didn't know if I was going to like it so much, but I do. And now I can blog from anywhere, not just my actual laptop that has a battery life of about 30 minutes. Kind of defeats the purpose of being a laptop. The only downside is that some iPad apps can only be used in portrait mode and you have to take the iPad out of the case for that. And to close out this post, I have to tell you that I am now the mother of a 7 year old. My baby boy had a birthday yesterday. If I think about it in age, it doesn't seem possible for him to be 7. But if I think about it in years, it sometimes feels a lot longer than 7 years. I think that is just because we have gone through so much in those years. But either way, I love him like there is no tomorrow. He had a fun day yesterday and we took him out to dinner last night. We celebrated his birthday with our family earlier this month, and tomorrow we are celebrating with our friends. We are having a water party in our backyard. It should be a lot of fun. I knew this was going to be a busy week, getting ready for the party, but that still didn't stop my body from letting me down. I ended up with bronchitis this week and I have been coughing my head off every day and every night. I haven't had much sleep and I'm running on fumes, but I'm still going. The steroid that the Dr. gave me has turned my face red, but hopefully it starts taking care of my cough SOON. And I have to say that if it wasn't for the help of the best neighbor ever, I wouldn't have gotten everything done. She has all but taken over my party planning and decorations. It will be obvious that I didn't do it, because I'm just not creative, but it will be such a cute party. I can't wait to share with you guys all the fun we have.

Quick Update

I don't really have a lot to update right now. John did have the EEG and EKG along with a holter monitor on Friday last week. The results from the EEG are in. It showed no abnormalities (which is par for the course with him). It showed no signs of seizures either, although that doesn't mean that he hasn't had any. But at least we know his brain is functioning the way it should be for him. It's always good when a test shows no abnormalities, but at the same time, it would be nice to get an explanation for what's going on.

The EKG showed a normal sinus rhythm, but it also showed a possible left and right hypertrophy. I asked what that means. It could mean absolutely nothing, that it is just a variant of normal (meaning normal for him). It could also mean a thickening of the heart wall. My favorite nurse looked back at his only other cardio work up he has had, from his time in the NICU, and the report then said the exact same thing. An echo cardiogram was done then and it showed nothing wrong. But it's been almost 7 years, so the doctor thought it would be a good idea to do another echo. The holter results are still not back, which isn't a big surprise to me. It sometimes take longer than they say to get a report.

He was scheduled to have an MRI today, but the anesthesiologist will not sedate him for an MRI until they get the results back from the echo. Now here is the crazy part. I think John will need to be sedated for an echo. I know how wild he can be and I just don't think he will lay still while they spread goo all over his chest. However, they do not do sedated echos for kids 6 and older. If they do need to be sedated, it has to be under anesthesia, and they say they won't put him under anesthesia until he's had an echo. But he may not be able to have an echo without anesthesia. Confused yet? Yeah, me too. So we are going to try and do a regular, unsedated echo on Tuesday to see if they can get enough information to tell them it's okay to sedate him for an MRI.

So that is a little bit of what I have been dealing with this week. Maybe another time, I'll have enough energy to tell you about what we have been going through with our school district for next year. Needless to say, I still hate May.

A new Chapter

Our son must have thought that life was getting a little bit boring, so he decided to spice things up to add a little more excitement to it.  Last week we began a new chapter in this crazy story we are writing.  John is now being treated for seizures. This is not something I ever expected to happen, but it has.

It all began last Tuesday, at school. I got a call from his school nurse some time after lunch. We always joke when she calls because we talk so frequently. But when I answered I could tell she was not in a joking mood. She told me that she got called down to John's class because he was not feeling well. When she got there, he was on the floor, lying back against his teacher. His body was completely limp and he was not responding. Also, his eyes were constantly moving back and forth. She kept trying to call his name and get his attention, but he wouldn't respond. She said he was so pale that he looked like he wasn't breathing. She was just about to call 911 when he finally snapped out of it. Then he was acting like his normal self. So she called me instead. She said the whole thing only lasted about 30 seconds. I have never seen him do anything like this, so I went to the school. He of course was acting normal. I knew he had a long day on both Sunday and Monday, so I thought he was just tired. I took him home and put him down for a nap and he slept for 3 hours, which is unusual. He was back to his normal self when he woke up. He went back to school Wednesday, and I called his neurologist to let her know what had happened. She wasn't totally convinced it was a seizure. But she said even if it was, she wouldn't consider medication after just one. So she ordered a few tests and I got them all scheduled over the next couple of days.

He was at school on Friday morning, and right about 10:00, I got another call from his nurse. She said he was doing the same thing again. This time she was trying to pinch his fingers but he wouldn't respond to that.  When they pinched his arm, he pulled away, but he was still out of it. So I went to the school and was able to talk to his teacher. This time he was standing in his stander when it happened. He started with a cry and then his whole body went limp. She took him out of his stander and layed him on the floor. After the nurse called me, his teacher picked him up and carried him to the clinic. She said about half way there, he snapped out of it and started to smile. This time it lasted about 1 minute. I got John home and called his doctor again. She decided she wanted to see him right away.

So I took him down to TCH where Tommy met us. We got down there at 1:30 on a Friday afternoon, so you can just imagine what it was like. She arranged to have a couple of the tests I had already scheduled done while we were there. She walked with us to cardiology where he had an EKG and a 24 hour monitor put on. Because he got so pale during the episode, she wanted to make sure he wasn't having any arrythmias that were causing him to do this. Of course, being my son, that is a high possibility. After cardiology, we went up to neurophysiology to have an EEG. Dr. H met us up there and talked with us a few minutes while they were setting up. She said the eyes moving back and forth made her think it was a seizure and since he has now had 2, she wants to start him on medication for it. She also said that some people can tell when they are about to have one, and because he cries right before it happens, that might be his way of telling us it's coming. John never, ever cries unless something is wrong,so there is obviously something going on inside his body that he knows is not right. Tommy asked why she thought he would suddenly start having this now. She said that a seizure is basically any disruption of the normal electrical activity in the brain. John's brain has always been slightly underdeveloped. There is something in the brain called myelin which is kind of what conducts the electrical activity. Because the myelin in John's brain may finally be developing to a point where the electrical activity is conducting better, this may be what's causing the problems. It's a good thing that his brain is developing, but at the same time, we may now be finding out about the seizures. So now we have started the medication. She said that the only side effects we may see are irritability and increased sleepiness. Yesterday, he took a 4 hour nap, and then I had to wake him up this morning at 7:30. We aren't sure yet if it's from the medicine or if it's because we had company this weekend and he was just tired. We are at therapy now and then we will be going to school. Our boy is a trooper and he is just taking it all in stride.

So now we wait for results from our tests to see if there is anything else we need to add.  Even with all that is going on, he is still the happiest kid I know.  It is an extreme pleasure to be that boy's mommy.

Please pray for us as we adjust to this new reality.  Also pray for John as his body has to adjust to this new medication.

Special Olympics

On Monday afternoon, John's school hosted an event called The Special Olympics Young Athlete Program.  This was just for the kids in John's school who are in life skills and PPCD.  I really didn't know what to expect because we haven't gotten much information about it.  I remember signing a consent earlier in the year for him to participate, but I hadn't heard anything about it since.  Apparently, they have been practicing at school for different events.

Now it's not like the Special Olympics where kids compete in particular events and then they get medals for placing 1st, 2nd or 3rd.  I think this is just a warm up to prepare them to participate in such an event.  They were allotted so much time at each station, and each child got to do that activity.  It was just for fun.  The parents were invited to watch and we even got to walk around from station to station with our child.  It was just an exciting time for the kids to participate and have a bunch of people cheer for them.  The staff at the school did an excellent job organizing this.  It was a lot of fun to see the different kids get excited over an accomplishment.  They even invited all of the special buddies to come and watch.  Many of them made signs for the kids participating with their name on it, and it was great to watch these kids interact together.

John did 3 events.  The first was tossing a ball into a basket, which actually was him rolling it off of his lap into the basket that sat at his feet.  He did that so fast that I couldn't even get a video of it.  Then as he sat in his chair, they gave him a large ball to roll on the floor and knock down some large, inflateable bowling pins.  When all of the pins didn't fall, the teacher pushed his chair through and knocked down the rest.  The last thing he did was a regular type of bowling.  They had small plastic pins set up in a diamond shape and they put a ramp in front of John.  They put a small ball on the ramp and he had to push the ball down the ramp and knock over the pins.  I've actually seen ramps like this at bowling alleys for young children.  I think I might know a new family activity we can try.  I did get a video of him doing this and he knocked down all of the pins. 

After all of the stations were complete, they lined up all of the kids and they each got a ribbon.  And probably the best part of the whole experience was the parade they did afterward.  All of the kids in the school along with teachers and staff members lined the hallways around the school.  The kids that participated, along with the Special Ed staff and the special buddies, walked around the school in a parade while everyone clapped and cheered for them.  It was really a special thing to watch.  I was so excited to be able to watch.  And my child was very wild and excited.  He had worked up a sweat by the time it was over.

Here are a few pictures and videos that I took.

Getting ready for the basket toss

Making a silly face

John with his buddy, Evan.

Getting ready to bowl.

I did have a video of the parade, but for some reason it doesn't want to upload.  I'll have to try and upload it to facebook.