The Countdown is on

70 days!  Barring any setbacks, that's how many days are left before John says goodbye to his trach, hopefully for good.  Today we saw the Pulmonologist.  We discussed with her the ENT's time table for decanulation (fancy word for taking that dang thing out of his neck).  She was completely on board.  It's kind of funny because I have always sensed a sort of power struggle between our ENT and our Pulmonologist, but when it came right down to it, they agreed.  That's a nice feeling as a parent.  So the official date is April 7.  The time table looks like this:

April 1 (no joke) John will go to TCH for an outpatient procedure called a DL&B.  This is just a check of his airway.  We do this annually anyway, just to make sure that no granuloma tissue has formed in his airway that needs to be removed.  He will come home that day.

April 6 (day after Easter) John will be admitted to TCH for a minimum of 2 nights.  That night, they will put a cap on his trach and monitor him while he sleeps.  This is the same cap that he has been wearing during the day for a little while now.  It doesn't allow him to breath through his trach at all.  He has to breath completely through his mouth or nose.  We aren't allowed to let him sleep with it at home, so he only wears it during waking hours.

April 7 (DC Day) If all goes well after the first night, they will take the trach out.  The stoma (hole in his neck) will be bandaged.  He will stay in the hospital one more night so they can monitor his sleep without the trach.

April 8 (1st day post trach) If all goes well after the 2nd night, John will be discharged to come home.  And that is when the real fun begins.

This all started about 6 months ago.  On July 22, John went in for his 16th overall sleep study.  Let that number sink in for a minute.  in 9 years of life, he has had his sleep studied 16 times.  And it's not like he just goes in and goes to sleep and they watch him.  If you saw the amount of junk that they put on his head and body, you would be amazed that he's able to sleep at all.  When he was really little, it was a nightmare.  He screamed bloody murder the entire time they were attaching all of the electrodes and by the time they were done, he had himself so worked up he couldn't breathe.  Now, he doesn't cry but keeping him still long enough for them to get it all on is pretty tough.  They usually end up attaching each electrode at least twice after it's all said and done.  The other hard part is that I don't sleep well when I'm there.  So it's just a pretty miserable night all together.

photo from the July 22 sleep study

On July 29, (ironically 9 years and 1 day after his trach was inserted) we saw the pulmonologist for the results.  For some reason, I guess he just had a feeling, Tommy decided to go with me to this appointment.  He used to go to all of them, but after a while, nothing new was going on so he just let me take him myself.  But this time, he came with me.  Dr. K walked in and had already looked at the study.  The results really weren't what we were expecting.  You see, the two previous studies showed that while his apnea was significantly decreased, he was now having trouble expelling enough Carbon Dioxide at night.  He just wasn't taking deep enough breaths to blow it off.  So we continued with the ventilation at night to help him get rid of the CO2.  This sleep study, however, showed that his CO2 levels were in the normal range, but his apnea was higher than it had been.  We were just puzzled.  I thought to myself, this is never going to end.  But then Dr. K said something that surprised me.  She said she thinks it's time we see if taking the trach out will make a difference.  Apparently, he still has a significant amount of obstructive apnea and we think that is caused by the trach itself.  So if we remove the trach, the obstructive apnea should go away.  Also, obstructive apnea can also caused increased central apnea, which is when the brain just doesn't tell you to breathe.  So by eliminating the obstructive, we should be able to reduce the central.  We made a plan that we would get him through cold and flu season keeping the status quo, and then sometime in the spring we would try decanulation.  When this was decided in July, spring seemed like such a long time away.  But here it is.  February will be here in a few days and before we know it, it will be April.  In just a little over 2 months, our world will change.  And I am feeling so many emotions about it.

I'm excited because after nearly 10 years, my boy will be able to leave a more normal life.  Life with a trach is hard.  It goes beyond the realm of having a child with special needs.  It means he cannot be near water unattended, and his head can never go underwater.  That makes bath time especially tough.  It means he is more susceptible to germs because he doesn't have a mouth and nose to filter out many of the bad things in the air.  It means we can't just call the teenage girl next door to babysit.  We have to hire someone and spend hours training them on things like suctioning and how to know if the trach comes out and how to put a trach back in if it does come out.  They can't be left alone with him until they have sufficiently demonstrated they can do those things without me having to tell them.  So after nearly 10 years, we will finally have a little bit more freedom in things we haven't had before.

I'm anxious because although this will make our day time routine much easier and will improve his quality of life, it will mean that we will no longer be able to have night time nursing.  For nearly 10 years we have had a person in our house at night watching our son.  And one of those nurses has been with us since the very beginning.  Once the trach comes out, our insurance will no longer pay for us to keep the nurses.  This means I will be spending a lot of nights watching John.  We will set up some kind of system where I will sleep in the room with him, but that usually equates to not a lot of sleep for me.  I don't know how long that period of time will last.  So I'm anxious, and I'm sleepy already just thinking about it.

I'm nervous because I know this isn't a done deal.  There are a lot of unknowns.  This is not a slam dunk.  If his apnea doesn't improve, it means he will not get a good night's sleep.  His brain does what it's supposed to do by waking him up if he doesn't breathe.  But this means that his quality of sleep will suffer.  He will be more tired and that will affect his behavior, his school and his development.  And prolonged periods of time without good quality sleep can cause organs to begin to fail.  So I'm nervous that his quality of sleep will suffer, and my happy, healthy boy will no be as happy or as healthy anymore.

I'm afraid because if this doesn't work like we hope, he may have to have the trach put back in.  I've always prayed that when the time came for him to have his trach out, it would be a no brainer.  I wanted there to be no doubt that he would be okay without it.  But that's not the case.  This is kind of a trail and error situation, so there is a possibility that he doesn't tolerate it.  And I really don't want to go through the process again of having a trach inserted.  That was the worst week of our life because he had to be completely still and sedated in order to let the track heal.  I couldn't hold him or even touch him and he did not look like himself.  I don't want to go through that again.  So I'm afraid because I don't know what the future holds.

I'm blessed because although I don't know what the future holds, I do know who holds my future.  Our faith has kept us going all of these years.  Tons and tons of prayers have gone up on our behalf and we have received tremendous support from our family, friends and church family.  It is very powerful to know all of those people have been praying for us all of these years.  We have been blessed beyond our wildest dreams in this regard.  But mostly, I'm blessed because I know that it's all in God's hands.  He has had this mapped out from day one and nothing that has happened or that will happen will be a surprise to him.  We may not understand it, but he does, and knowing that he is in control means knowing that even if it's not okay, it will be okay.  He will lead us through the difficult times like he always has.  I hold on to the knowledge that one day, we will be with him in heaven, and my little boy will be made whole.  No more trach, no more wheelchair, no more diapers and no more lack of communication.  He will be walking and talking and doing all of the things he was unable to do on this earth, and that is the greatest hope of all.

You have all been so faithful to pray for us over the years, so I'm going to solicit your prayers once again.  Pray for John over the next 70 days that he will have no illnesses or set backs that will prevent this from happening.  Pray for him that once the trach comes out, his body will respond accordingly and this will be the end for good.  Pray for Tommy and I as we deal with the uncertainty.  Our whole lives and schedules will change completely, so pray that we will handle it well.  And pray that after our nursing days are over, I will find some way to stay rested.  I've been though periods of time with little sleep and it just affects me in ways you can't imagine.  So please pray for easy nights once we get him home and settled in.

Thank you all so much for staying with us on this journey.  It has been a wild ride, but we wouldn't be near as sane as we are without all of your love and support.  And I ask one more thing of you.  Share our story.  If you meet someone in a situation that is similar to ours, share our story with them.  Even feel free to have them contact me.  It can be a lonely world when you are struggling with the health of a child.  Having someone to share those struggles with, to seek advice from, or even just someone to talk to who you know understands can make all of the difference in the world. 

I look forward to the updates in the weeks and months ahead.

Lucky #16?

Most of you know by now that part of John's trach journey is that he has a sleep study once a year.  In the early days, it was more like 2 or 3 times a year, but for the last few years, it has only been annually.  We usually get them done in the summer because when we get home the next day, he is in no shape to go to school.  Although it's called a SLEEP Study, not much sleep is had by either of us.

This year's study was scheduled for July 22.  This happened to be the very next Tuesday after we got home from Austin.  Although I wasn't really mentally prepared for it, I knew it needed to be done.

Two years ago, we went into the sleep study thinking this was going to be it.  This was going to be the time when they tell us his apnea is acceptable and we can start the process of decannulation (removing the trach).  For the 6 months prior to the sleep study, John had been sleeping without his ventilator and without oxygen and had done quite well.  We thought if that was the case, surely he was ready to have the trach out.  After the study, we got the results back and it wasn't exactly what we thought.  We were right in the fact that his apnea was at an acceptable level.  He had gone from having hundreds of apnea events per hour to having less than 20 per hour.  However, a new problem had arisen.  They discovered that because he is sort of a shallow breather at night, he doesn't take deep enough breaths to expel enough Carbon Dioxide when he sleeps.  This may not be significant in the short term, but over time, the increased CO2 can cause damage to major organs.  So not only was he not ready to remove the trach, we had to put him back on the ventilator while sleeping.  We felt like it was a huge setback, but obviously we want to keep his organs healthy.

Last year's study showed pretty much the same thing, so we went into this one not expecting any different.  Our process on Sleep Study days is that John and I meet Tommy for dinner between 5:00 and 5:30 before heading to the hospital.  We go up to the sleep center at 6:30 and they begin the process of getting him all wired for sound.  After we get him set up and in bed, Tommy leaves and goes home and I stay at the hospital for the night.  While we were waiting for the tech to come and get us, Tommy and I were trying to guess which number sleep study this was.  We both were thinking it was #18.  We asked the tech when she brought us back to the room and she said it was #16.  Would this be lucky #16?

Here are a couple of photos of John attached to all of the wires.  We had his hair cut short before hand to make it easier to attach and wash clean after.

We finally got settled in and got the study started.  John did not sleep well that night, even worse than he normally does.  We got up in the morning, detached him from everything and I took him home.  I gave him a good bath to wash all of the goop off of him, fed him breakfast and then he and I took a nap.  I woke up after 2 hours because I had somewhere to be but John slept for 4 hours.  He obviously did not get enough sleep during the night.

A week later, we had an appointment with his Pulmonologist and were looking forward to hearing the results.  She came in with good news and not so good news.

First, the not so good news.  This study showed that his CO2 level was in the acceptable range all night, (yay) but his apnea was worse this time than it had been the last two times.  He had something like 55 events per hour.  While it's still significantly better than it used to be, it was higher than it had been in past studies.  There was some obstructive apnea, which means that there is something in his airway that obstructs the flow of air, but there was a significant amount of central apnea, which means that his brain is just not telling him to breath.  Obstructive apnea can be fixed but central apnea cannot be fixed.  We discussed the possibility of using a CPAP mask to help him breath instead of the trach, but I know my child.  He will not keep that thing on all night and I will be up and down all night putting it back in place.  I told her that for us, that was not an option.

Now onto the better news.  She began to discuss the possibility that the trach itself could be causing the obstructive apnea.  If the trach wasn't there, all of the obstructive apnea might go away.  And she said it's possible that the obstruction of the trach could be causing some of the central.  Either way, we really won't know as long as the trach remains in place.  So we made a plan.  In 6 months we will go back to see her.  Then when it turns to spring and we are out of cold and flu season, we would go ahead and take the trach out and give it some time to see how he does.  After a certain amount of time passes, we will repeat a sleep study and see how it looks.  If he's doing fine, then we will be free of the trach.  If he continues to struggle, we will first try the CPAP mask and see how he does.  If that doesn't work for us, then we may have to reinsert the trach.  Obviously we don't want to have to do that as that will involve surgery, but we all kind of feel like we will never know until we try.  I really feel like he will mostly be fine without the trach but there are two areas of concern.  If he continues to have the apnea, he will not get a good night's sleep and that can affect his developmental progress.  It also can put more pressure on his heart, over time causing it to begin to fail.  And if he continues to not expel CO2, then it can, over time, affect his organs.

The last thing we need to do before we make this decision final is consult with the ENT.  We have an appointment with her on September 10.  We will ask her what her opinion is of having to reinsert the trach should it come to that.  There may be scar tissue built up that would make it hard to do.  Once we get the green light from her, then we will be good to go.

Please pray with us over the next 6 months that God will make his plan for John clear to us.  Pray that John continues to thrive like he is now and that his development continues to improve.  And pray for us as we make these big decisions.  We want to do what's best for John, even if that means he keeps his trach for the rest of his life.  I will keep you all posted as we get more information.

Summer Therapy

Can you believe it's April and that this school year is almost over?  I can't.  It seems like it was just a few weeks ago that we were beginning an adventure at a new school, and I wasn't happy about it.  But I must say that it has been a good year for John.  His new teacher is very supportive and does a great job communicating and taking care of John's needs so that I don't have to worry while he's there.  The nurse and nurse assistant have both proven to be quite competent at replacing John's trach, since it has come out several times at school this year.  He is learning and making progress towards his goals and most importantly, he loves going to school.  I've gotten involved with the Special Buddies program, which in turn makes me more engaged and committed to John's whole school experience.  While I still would have liked for him to have stayed with last year's teacher and to see him build on what he accomplished last year, I am very pleased with how this year has turned out.

But with the end of the school year comes summer.  Summer can be tough, keeping up with John all day.  I try to plan activities, but there is only so much you can do in Houston that is indoors so that we don't die in the heat.  I began planning our summer and realized our calendar has gotten quite crowded. June has Vacation Bible School and August has Super Place Camp, both of which will be held at Tallowood.  But the busiest month, and maybe the most exciting will be July when John and I will be spending 3 weeks in Austin while he goes through TheraSuit Therapy.

I told you all about TheraSuit last year when John was supposed to participate in it here in Houston.  But the only clinic in Houston who did this therapy, closed the month before he was supposed to start.  I was very disappointed at the time, but now realize it was probably for the best.  John started horse therapy last summer so if he would have done both, he would have been exhausted and maybe not even able to participate fully.  But this summer, we are not going to do horse therapy since we are doing it throughout the school year.  So we will be able to concentrate all of his energy towards the TheraSuit.  If you want to know more about TheraSuit therapy and what is involved in it and how it can help John click here.  If you follow the link, be sure to look at the pictures.

I started thinking on our way to Kinder at Easter that it would be nice for John to be able to participate.  Our Austin friends have done this therapy at a clinic in Austin and have been telling us we should come there to do it.  But because John requires night time nursing, I never thought it would be possible to stay away from home for that many nights.  But as I thought more about it, I thought that it may be possible.  We could stay in a hotel in Austin during the week and then come home on the weekends where we have our regular nurses.  I even decided that if I have to, I will take care of him at night as well as during the day if that is the only way we could do it.  I knew I'd be able to get some sleep on the weekends so I figured I could tough it out.  But then it dawned on me that our nursing agency has an office in Austin and maybe, just maybe they could provide night time nurses for the nights we are there.    After talking with our nurse manager, she thinks it's a possibility since we have a lot of advanced notice to line someone up.  So the next step was to contact the clinic and see if they had any openings.

I got through to one of the Therasuit coordinators and she told me that they had two available spots, both in the afternoon.  One was July 1-19 and the second was July 29-August 9.  She told me she would send me an application and I needed to fill it out and return it so they could go over it and decide whether or not he would be accepted.  It was a lengthy application that required a lot of health history.  It took a couple of days for me to go over and complete it as accurately as possible.  Once I sent it in, I just had to wait.  Meanwhile, I knew that even if he was accepted, there was still the cost to consider.  It's not a cheap therapy and I knew we would need help from insurance in order for John to participate.I know a lot of insurance companies don't pay anything towards this therapy and some only pay a portion.  I was just hoping that ours would cover enough.  After a week of waiting, I finally got the email I had been waiting for.  John was accepted.  And the best part, our insurance is picking up the cost of the entire therapy, with the exception of the daily co-pay.  I knew there was a $500 deposit required for holding his spot and the total of the daily co-pays came out to almost exactly that.  So it turns out, we won't be paying any more out of pocket than we already expected to pay.

It just feels like this is the exact right time for John to participate.  I knew there would be a few obstacles to clear in order to make that happen.  But as I got further into the process, God just cleared every one of those obstacles out of the way.  We still have a few more things to do before we start in July, but they shouldn't be a problem.  I am so excited for John to be able to do this.  He may not like it at times because it's going to be hard, and he may even cry or pitch a fit.  But I know in the long run, this is really going to be best for him.  It's going to really strengthen the muscles that need it most as well as help with balance and coordination.  I'm so excited to see the difference this could make in his motor skills.

I have just a couple of prayer requests for you to consider.  First, pray that the nursing agency is able to find a suitable night time nurse to take care of John the 4 nights a week we will be there.  It would be exponentially better for both of us, if we can both get a good night's sleep each night.  Second, pray for John as he goes through the therapy.  I know he's going to be exhausted each and every day.  I know it's going to be hard and maybe at times uncomfortable.  Just pray that he is physically able to tolerate the tough days.  Third, pray that this will help us to see major improvements in John's strength and overall motor skills.

We don't have a specific genetic diagnosis that explains all of John's special needs.  One reason we would like one is to be sure we are doing everything we can to ensure that John will be able to meet his full potential.  With the addition of this therapy this summer, it finally feels like we are doing everything we can.  With that being said, pray for us as we await the results of some recent genetic testing.  All three of us had to submit blood work to be analyzed in hopes of discovering a diagnosis for John.  Having a diagnosis will not change the way we treat him or love him, but like I said before, it may affect the things we do for him to help him reach his potential.  And it will be nice just to have a name.  Maybe we can meet others with the same diagnosis that we can lean on for support and advice.

Once again, I thank you all for being so faithful with your support and prayers.  Without them, we wouldn't be near as put together as we are.

Sleep Study Results

I'm sorry it's taken me so long to get you this update. I've had several people ask if we have gotten the results from the sleep study and I can finally say, "yes we have." We actually heard from the pulmonologist's nurse on Friday morning, but the results we had left us with more questions. So I was waiting to see the ENT today to get further clarification before updating you. On Friday we were told that he slept really well the first half of the night, when his trach was open. But during the second half of the night, when his trach was closed, he didn't sleep as well and he had some obstructive apnea. So it was determined that he is completely fine to sleep without the vent and without oxygen as long as his trach is opened. My question was how much obstruction did he have and how much was caused by the trach being in his airway. Also, if the trach were removed, would that take care of the obstruction. The nurse was supposed to talk to the doctor on Friday and call me back that afternoon, but I never heard back from her. So today, we saw the ENT. We like this doctor better anyway. She is just as anxious to get rid of the trach as we are, so I knew that we could at least come up with a plan. So she looked at the results and gave me the specifics from the sleep study. With his trach opened, he had approximately 5 central apnea events per hour (which is about what he had before) and he had 3 obstructive events per hour. With the trach closed however, he had 3 central apnea events per hour (less because he didn't sleep as much with his trach closed) and 13 obstructive events. His lowest oxygen saturation while opened and closed was 88%. That's actually not too bad. But it is of some concern that he had so much obstruction with the trach closed. So we came up with a plan. We are going to start capping John's trach for all waking hours. Then on July 20, the ENT will do a broncoscopy on John to check his airway for any kind of obstruction. Once that is done, Tommy and I will meet with her to discuss how we want to proceed from there. We will discuss the risks of decanulating John and whether or not it is worth doing. So, we didn't exactly hear what we were hoping to hear, that he is absolutely ready to have the trach removed, but it's not completely ruled out either. It just may not be this summer like we hoped.

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.

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.

Progress...Maybe?

It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going.  The first 3 nights were great.  He slept with no ventilator and no oxygen and did quite well.  But when Friday night came around, all of a sudden, he needed oxygen right away.  So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off.  Saturday night was much the same, except the oxygen was turned off at 4am.  So at this point I'm thinking, 3 steps forward and 2 steps back.

Sunday night came and we were able to get him to sleep without the oxygen.  So I thought we were making progress.  But in the morning, the nurse told me he turned the oxygen on from 1am to 4am.  DRATS!  I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does.  I'm just thinking maybe he's more tired and not taking deep enough breaths.

Monday and Tuesday were much the same.  He needed oxygen part of the night, but not all of the night.  By now it's really starting to bug me.  I guess all of these years with John has not given me much patience.  I want to see progress but I'm not doing so well to wait for it.

So last night, we put him to bed and it was the same thing.  His oxygen levels were below 92 and wouldn't come up without oxygen.  And even with the oxygen, they were only around 93 or 94.  None of it made any sense to me.  He should have higher oxygen sats with oxygen.  So I sat down in the chair in his room and began to tear up.  I'm just about at my breaking point and about ready to put him back on the ventilator.  I want my baby to sleep well and I want to make sure he's able to breathe well.  So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading.  We have been struggling with the pulse ox probe on his toe.  It's very tricky to get it in just the right spot to get a good reading.  But his thumb is smaller so it shouldn't be hard to get it on there right.  So we get it on his thumb, and low and behold his oxygen saturation is 98%.  AMAZING!  Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen.  The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head.  That would cause a problem with the signal picking up.  So again, my brilliant husband suggested that we put it on his second toe instead of his big toe.  It's smaller and we shouldn't have a problem getting it on.  So that is what we ended up doing.  And VOILA!  No oxygen was needed all night long.  He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.

So maybe the progress wasn't necessarily John's this time.  He has probably been doing just fine all along and we didn't know.  Maybe the progress was mine.  I am the one who needs to learn a little patience.  I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.

Craziness!

The last few weeks have been quite a whirlwind.  Our normal routine has been out of sync for about 2 weeks now and it's been crazy.  Today is the first day that has felt "normal" in quite a while and hopefully it will stay that way for a while.

Two weekends ago, John began to get sick.  On that Sunday night, he didn't sleep well and even woke up during the night crying, which is something he never does.  The next morning, I took him to therapy.  It was supposed to be his first day of Physical Therapy.  About half way through his OT, he started making unhappy faces and he had tears falling from his eyes.  I didn't know what was bothering him, but I knew he didn't feel well.  So I decided to take him home and skip the physical therapy.  It was a school holiday so we just stayed home the rest of the day and rested.

That evening, while eating dinner, his tummy got upset and he vomited everywhere.  He really hadn't had much to eat or drink that day, so I was shocked with how much was actually in his stomach.  Thank goodness that Tommy was home and he took over the clean up efforts.  That was a big mess.  So needless to say, he stayed home from school the next day.  I thought he was feeling better and would be back to school on Wednesday, but after we put him to bed that night. he got sick again.  So he stayed home Wednesday.  He managed to stay well all day Wednesday and made it to school on Thursday and Friday.

Saturday, we took a day trip to San Antonio to celebrate the 7th birthday of a very special friend at Morgan's Wonderland.  I have talked about Blake before.  We met him and his family during the time John spent in the NICU at Texas Children's Hospital.  We have been friends and have kept in touch ever since.  He will always be John's very first friend.  In case you don't remember, Morgan's Wonderland is an ultra accessible park in San Antonio that allows children of all abilities the opportunity to play together.  We always enjoy spending time there.  After several hours of fun and some yummy birthday cake, we headed home.  John got fussy on the car ride home, and that was my first sign that he wasn't feeling 100%.

We got home that evening and John began to have tummy troubles again.  This time it was the other end that was giving him trouble.  I will spare you the details on that.  So after having his diaper changed by the nurse every hour that night and into the morning, we finally gave him some Imodium on Sunday morning and that seemed to take care of it.  I planned to keep him home on Monday to rest.  Monday night I went to dinner with some friends, and right before we left to come home, Tommy called and told me that John had gotten sick again after going to bed.  At this point I felt like it was never going to end.  So we kept him home again on Tuesday and this time took him to see the doctor.  She said it was just a virus and to keep him hydrated as best as we could. 

Meanwhile, Tommy was on vacation this whole week, so he was home and around John more than normal.  So while I planned to keep John home again on Wednesday, I did not plan on Tommy waking up Wednesday morning sick.  I was having flashes of a terrible week we had a couple of years ago when John had a stomach bug that I eventually got and Tommy had his "near fatal illness" all at the same time.  Fortunately, Tommy was only sick for that one day and was feeling back to normal by Thursday.  We sent John to school on Thursday, only to get a call 2 hours into the day that he was not feeling well and needed to come home.  I think he just didn't have his full strength back yet and didn't have the energy to make it through the day.  We sent him to school on Friday and he did well.  Today is his third day back to school and he seems to be doing well, but now he's gotten very congested and we are fighting to keep the trach clear of secretions and to keep the area around the trach clean and dry.  So it just feels like he is never going to be completely well.  I will be so happy to get my John all of the way back.

Friday, I was supposed to sub for Junior High Girl's PE, and then afterward, Tommy and I were leaving to go to Baton Rouge for the LSU/Auburn game.  We were planning to leave John home with my parents so we could enjoy the weekend by ourselves.  I woke up Friday morning feeling terrible.  There was no way I could have made it through the day feeling the way I did.  It's hard enough to make it through a day of Junior High when you are at full strength.  So I called in sick and stayed home and slept most of the day.  I was finally feeling some better, so we decided to go ahead and go to Baton Rouge.

We stayed the weekend with my good friend, ChristyPitre family here in Katy, who sold us their season tickets for that game.  The seats couldn't have been better.  They were under an overhang so it was shady and there was a nice breeze.  The seats also had seat backs so it was more comfortable to sit there.  Watching the Tigers beat Auburn pretty bad made me feel so much better.  Overall it was a fun weekend.

Yesterday, I did go to work in Junior High Girl's PE, so Tommy took one more day of vacation so he could take John to his therapies and then to school.  He seemed to have a good day at school.  I went to the doctor to find out why I still had a sore throat and came home with an antibiotic and steroid to hopefully get me well.  Today, was the first normal morning we have had in quite a while, and it was nice to get John on the school bus and be able to come in and drink my coffee and relax.  Hopefully there are more of these days to come in the near future.  Now, if I can figure where to start to get my house put back together.

July 28

On July 28, 1975, a baby boy was born, weighing in at a whopping 9lbs, 7oz.  He was given the name Jason Henry Mayes. (I'm probably going to catch a lot of flack for putting his middle name on here)  He was the second son to Chip and Carol Mayes and baby brother to Jimmie Mayes.  He later became a big brother to me.

Growing up with Jason was interesting to say the least.  He was always the life of the party, being voted Wittiest all four years of high school.  He was a member of the Kinder High School band, where he was the first chair trumpet player.  He made everyone laugh and always had a lot of friends.  And although he and I didn't always see eye to eye, I learned early on that when push came to shove, he would have my back. 

Happy Birthday, big brother. I hope your day has been special.

On July 28, 2005, my two month old baby boy went into surgery to get a tracheotomy.  We found out only the day before that it was necessary so we didn't have much time to prepare ourselves.  I remember being devastated when I found out.  The nurse in the NICU put a partition up around me so I could just hold my baby and cry. 

The next day, my parents came into town to be with us.  We all were able to kiss him goodbye as the nurses took him back to surgery.  He was crying because he hadn't been able to eat all day and it broke my heart.  I don't know how long the surgery lasted, but it felt like a very long time.  Finally we received word that the surgery was over and he had done well.  It would be a while before we were allowed to go in and see him.  I was not prepared for what I saw.  Because the new airway was fresh, it would take a little while before the track would be formed enough to change the trach.  So for the next week, they had to keep John completely still.  In order to do so, he was given a paralytic drug so he was unable to make any involuntary movements.  It was very difficult for me to see him that way and even harder not to be able to hold him or even touch him for the next week.

We were told that the trach was temporary and that he would probably only need it for 6 months to 1 year.  Fast forward 6 years and it's still there, although for a different reason.  It has become a part of our life and our daily routine.  It has made things much more difficult for us, but we know that it is necessary for him.  I don't know if or when he will be able to have the trach removed, but I will never forget that day, 6 years ago, when taking care of our son became a lot more difficult.

In honor of the two events that I will remember every year on this date, I wanted to post a few pictures of Jason and John together.

The first time they met.

Thanksgiving 2005

Christmas 2006

Getting started again

First of all, I am typing this on my iPad. It is very different. So if I have some spelling or punctuation mistakes, that is why. I will try not to type in my usual iPad/iPhone shorthand.

I am sitting in the waiting room at TCH west campus while John is at his occupational therapy appointment. We took a year off from all private therapies when he started kindergarten to let him adjust to the full day school schedule without wearing him out any more. I don't think I really intended to take the whole year off, but that's just the way that it worked out. Now that TCH has a hospital on our side of town, it is much easier to get to therapy. So I thought it was time to get him ba k into PT and OT during the summer so he'll be used to it again when school starts. Last week was our first OT session. Obviously I need to get back into the routine too because I completely forgot about it this morning and we were a little late getting here. Last week he had a good start so hopefully we can build on that and see some improvement with his eating. Some things we are working on is him recognizing that some foods have to be chewed before he can swallow it and drinking from a straw or cup. It's time to get rid of the bottle. We have to find a better way to get him drinking. And if I can stop Pureeing food, there would be a lot more options of food for him to eat. He would love trying new things and we could get him completely off of jarred food.

His PT evaluation isn't scheduled until August. We are still working on the walking and would like to get him a little more steady on his feet. Hopefully he hasn't lost too much since he stopped therapy last year and can pick up where he left off. I'll keep you updated on that progress when we start.

That's all for now. John should be about finished and will be coming out soon. Hoping his session was good today.

Sick again?

The good news is I figured out why John was a little grumpy at his birthday party.  The bad news is it was because he wasn't feeling well.  I should have known something was up because he wasn't really interested in drinking much of his milk on Saturday.  That is typically a sign that his throat is hurting.  But I just chalked it up to having a lot of people in the house and him not being able to concentrate.

Sunday morning was a typical morning.  He ate his breakfast and drank his milk without much trouble.  At lunch, he ate his food fine, but refused to drink his milk.  So we put him down for a nap.  While he was napping, Tommy and I left to run a few errands while my mom and dad stayed here with John.  They don't get to babysit much, so I don't think they really minded.  About 30 minutes or so later, my mom called and said that John had thrown up while he was sleeping.  She and dad got him cleaned up and then he crashed in her lap.  When we came home, he was still sleeping in her lap.  I checked his temperature and it was 101.7.  So we got him up and gave him a bath and then Tylenol.  We tried to get him to drink some and he would have none of it.  All he would do was cry.  The problem was, it was a Sunday and the next day was a holiday so the doctor's office wouldn't be opened until Tuesday.  I knew he couldn't wait that long.

So we loaded him in the car and took him to the ER.  It was our first time to check out the new TCH in Katy.  We were so thankful for this new hospital last night.  It was nice to be in an ER close to home.  And there was no one in the waiting room when we got there.

After we got him in a room and laid him on the bed, he decided that was the best time to throw up again.  It took us a while to get him cleaned up and then he was miserable.  The doctor came in to see him and decided to give him fluids and do a strep test.  She also checked his ears and said one was really red.  The strep test came back positive and we had to give him a dose of Zofran for the vomiting since he threw up again after receiving some of the fluids.  Finally he began to feel better.

4 hours later we walked out with a prescription for Zofran and Amoxicillan to treat the strep throat and inner ear infection that he had.  I had no idea his ear was hurting.  We finally got him in bed about midnight.

He felt much better today, and ate better without getting sick.  He drank all of his milk today, except for his milk at dinner.  Then he fell asleep in my lap.  Although he doesn't have any fever and hasn't gotten sick at all today, I think I'm going to keep him home from school tomorrow.  I hate for him to miss his last few days before school is out, but I think he'll feel better Wednesday and Thursday if he stays home one more day.

Results

Tommy spoke with John's sleep doctor on Monday, and the results are in from his sleep study.  There really isn't much to report.  His study was basically the same.  He had a little more than 5 apnea episodes per hour.  His lowest oxygen saturation was 80% (at home we keep it above 90%).   He hasn't gotten better, but he hasn't gotten worse.  So the question was where do we go from here.  For that, we were told to consult with his pulmonologist.

So yesterday, Tommy spoke with the pulmonology nurse.  According to the doctor, since his study hasn't really changed, she thought we should go ahead and try letting his sleep without a ventilator.  Instead of using the machine, we would just give him oxygen support throughout the night.  That way, if he does have apnea and his oxygen saturations fall, the oxygen will help him recover quickly when he does begin to breath again.

There are some positives for not using the ventilator.  First, the room would be quieter.  Also he wouldn't have so many tubes in his bed and it would be easier for him to flip from side to side.  We wouldn't have to worry so much about him getting tangled up.  It would be easier to put him to bed, which means that maybe we can actually go out before bed time and let someone else put him to bed.  This could mean that Tommy and I might actually be able to go away for a few days and leave him home with grandparents.  We have never done that.  It also makes travel easier.  We only have to worry about taking oxygen with us instead of having to pack up a ventilator and all of the parts that go with it.

There are also a few negatives that could come from not using the ventilator.  The main negative could be the quality of sleep he gets.  When a person stops breathing while they are sleeping, the natural reaction is for the brain to wake the body up so they can start to breath again.  If he is having a lot of apnea and he is waking up several times a night, he may not get the good quality of sleep that his body needs.  This can affect development and learning as well as his mood and behavior.  So this would be something we would have to keep a close eye on.  The other big thing that we worry about not using the ventilator is that the insurance company might decide that we no longer need nursing support at night.  I don't really think this will happen as long as he still has a trach.  In fact, several years ago, he didn't sleep with a ventilator at all.  We kept the nurse during that stretch.  So I think we will be ok, but it is something to think about.

But the biggest impact of stopping the ventilator is long term.  The doctor didn't say this in so many words, but Tommy and I both feel that if he does well without the ventilator, this could lead to him getting his trach out.  The reason he still has the trach is so he can be ventilated while he sleeps.  If he continues to get good sleep and thrive without benefit of the ventilator at night, then it is a very real possibility that he will no longer need the trach.  That is what we have been hoping and praying about for so long.  This possibility is still a while away.  If and when the time comes to take the trach out, it has to be in either the spring or summer.  Doctors do not remove trachs during the fall and winter, when cold and flu season is in full force.  So even if this works well, we are looking at a minimum of next spring.

So the plan for now is to let him finish school.  We will continue using the ventilator through the end of the school year, and then we'll start a trial run of no ventilator and see how it goes.  Please pray for us and for John as we make this adjustment.  For the first time in quite a while, we have gotten our hopes up for removing the trach.  Hopefully this time will be the charm.

Sleep Study

So here we are, at Texas Children's and the fun has begun.  I left the house a little before 5 this afternoon.  I met Tommy at Chick-fil-a for a quick dinner, and then we came to the hospital.  We were here about 6:45.  We got all signed in and then the fun started.  After we got him dressed for bed and gave him a bottle, the tech began to attach the electrodes to his head.  They start by measuring and marking his head in the exact location that they attach each electrode.  Then they attach it with some gel and put a piece of tape over the top for good measure.  After about 20-30 minutes of this, we were done.  I had the good foresight to bring my laptop with his new DVD so he could watch it while they did this part.  John did extremely well and thank goodness there was no crying.

Then we got him in bed and they began to attach electrodes to his legs and chest as well as put a strap across his chest and one across his belly.  They need to make sure if he takes a breath, it is recorded no matter how shallow he may be breathing.  All of this time, he was quite wild and it took Tommy and I both to keep him still.  When they finally had everything attached and working properly, they turned off the lights and it took him all of about 3 minutes to fall asleep.  That's my child, falls asleep under any situation.  Now let's just hope momma has no trouble going to sleep tonight.  Tommy left shortly after he fell asleep, so now it's just me.  I need to find something to occupy my time before falling asleep.   Thank goodness for free wifi.

We are doing the test a little differently than we thought.  We originally thought that they would start the test with his trach closed.  This means we put a cap on it and he has to breath completely through his mouth and nose.  This is generally how we start the night.  If and when the apnea gets too bad, they open the trach for the remainder of the night and then add oxygen if needed.  But apparently, the doctor wrote orders for the trach to be open the whole night.  That is actually good, because that should help him sleep better, which in turn will help me sleep better.

The only problem that has come up is I have something seriously wrong with my left eye.  It started hurting this evening while we were eating dinner and has just gotten worse.  I may be paying a visit to my friendly Optometrist before the week is over.

All in all, everything went very smoothly.  First prayer on the list was answered.  Now let's just pray the rest of the night goes just as smoothly.

Here are a few pictures I took during the preparation:



Getting his head marked up



Attaching electrodes



Side view of the wires



All wired with his stocking cap on.



Can't sleep

It is way past my bedtime right now and the reason I am up blogging  is because I can't sleep.  This doesn't happen to me often.  I have never been one to have problems falling asleep.  But tonight, I have a lot on my mind.  It's kind of ironic.  The thing that is on my mind is going to keep me from getting much sleep tomorrow night.  It would have been nice to sleep well tonight.

John is going for a sleep study tomorrow night at Texas Children's Hospital.  This is not something that is new to us.  This will be something like our 16th study.  The reason John hasn't been able to have his trach removed is because he has sleep apnea.  Some of the apnea is obstructive, meaning there is something in his airway blocking his airflow on occasion, but the majority and most severe of the apnea is central.  This means that his brain simply doesn't tell him to breath at times.  It's not all night, but it is often during the night.  There are many factors that determine how bad his apnea is each night. Some nights it's extremely bad, and some nights it's not bad at all.  But we haven't been able to pen point exactly what causes him to have more apnea on certain nights.  For this reason, he has to keep the trach in order for him to sleep with ventilator assistance at night.  The machine breathes for him in the event that his brain doesn't tell him to.  This keeps him from waking several times during the night, allowing him to get a good night's sleep.  So because of this very long explanation, we have to go periodically for the doctors to assess how well he is sleeping and if his apnea is still severe enough to require a trach.

There are a few specific things I ask for you to pray about.

1.  Pray for John during the "setup" process.  This is when they attach what seems like 1000 electrodes to John's head so they can read his brain activity during his sleep.  No it's not really 1000 electrodes, but it is a lot and it seems to take forever.  They also attached various other belts and wires to different parts of him all in an effort to measure exactly when he stops breathing during the night.   In the past, this has made John very upset, to the point where it took a long time to get him calm enough to fall asleep.  Pray for him to stay calm during this process and to fall asleep quickly and easily.

2.  Pray that sleep is not hard to come by for either of us.  We have always resigned ourselves to the fact that we just aren't going to get much sleep while we are there.  John wakes a lot during the night and tosses and turns and this keeps Tommy and I awake since we sleep in the room with him.  It makes for a very long night.

3.  Pray that the night passes quickly for all of us.  I will be ready to get him home in the morning and get all of the junk washed out of his hair so that he and I can lay down and take a nap.  Hopefully he will be able to go to school after his nap.

4.  Pray for me.  Tommy and I have been together for every one of these studies.  John has always slept in a crib in the past so that leaves two beds available for both of us to sleep. This time he will be too big for a crib so he will likely need a regular bed.  This will leave only one extra bed.  So after we get him settled in for the night, Tommy will come home and sleep in our bed, while I stay there to sleep with John.  Pray for me to have patience and strength to make it through the night by myself.

5.  Lastly, please pray for the results to be positive.  We won't get these results for a week or two after the study.  We are not overly optimistic about them.  We have gotten our hopes up so many times in the past and have been disappointed.  So we try not to the think about the results and just focus on getting through the night.  We are very doubtful that his apnea will have improved enough to have the trach removed (although we know God is still in the business of miracles) but we would like to see some improvement.

This is just another one of those things that we have had to experience here on our trip to "Holland".  We weren't expecting it to be this way, but we have learned to adapt.  We love our son more than we ever thought possible and we will do everything we can to help him live a full and happy life.  That is what being a parent is all about.

It's been a while

It's been several weeks since my last post.  I really don't have a lot to report, except that I have been sick AGAIN!

Two weekends ago, we got the opportunity to go with Tommy's friend, Mark, and his wife, Shelley, to the ranch that is owned by Shelley's parents.  The ranch is about 3 1/2 hours away, near Copperas Cove, Texas.  We were also joined for the weekend by a mutual friend of Tommy and Mark, Katie, and her husband, Trent, and their son.  We were very excited for the chance to get away and relax some.  Let me tell you how awesome ranch life is.  This place is pretty much in the middle of nowhere, and is 500+ acres of solitude.  They just built a new house on the property, and it is very nice and spacious.  They also have lots of toys, like four wheelers, and other forms of transportation to explore the property.  That is my favorite part of going.

The week before we went, I began feeling a little congested, but it wasn't too bad and I thought it would pass.  Then John came home from school on Thursday and was running fever.  After he proceeded to get sick all over his bed in the middle of the night (causing us to have to bath him and change his sheets), he stayed home from school Friday and began feeling better.  So we left early Saturday morning for the ranch.  We spent time hanging out and visiting, and then later in the afternoon, Shelley and I got on the four wheelers and went for the ride around the property.  I had a blast.  It just feels very relaxing.  Then sometime that night, I started to get a sore throat and just felt all around crummy.  I woke up the next morning, not feeling any better and running a temp.  So we decided to pack up and come home early that day.

On Monday, I went to the doctor, and after a strep test came back negative, I was given a prescription for a sinus infection.  By then, I was full blown sick and felt terrible.  This wiped me out for the entire week, and at the end of the week, my mom came to give me a hand.  I have to say a big fat THANK YOU to our neighbor for cooking dinner for us twice that week.  Both times she brought over enough for two meals, so we were able to eat for 4 nights that week.  YOU ROCK, Kerry.

Finally by the end of the week, I was beginning to feel better.  Tommy went to Lafayette on Sunday because he had meetings there on Monday.  My mom stayed until Monday.  I finished up my round of antibiotics and thought I was better.  Until yesterday.  Now the congestion and sinus pressure are back in my head and in my face.  It does not feel good at all.  So I called the doctor today and now I've started a second round of antibiotics.  This is the third sinus infection I have had in 3 months, and I'm getting tired of it.  I'm beginning to think I need to see an ENT and try to figure out how to get rid of them.  It would be one thing if I just had some congestion, but they are completely wiping me out, and I just can't afford to be out of commission.  So here's to hoping this round of meds wipes it clean.

On a side note, I took John for a check up with his neurologist today.  This particular doctor monitors more of his sleep habits.  She is the one who reads all of his sleep studies and she keeps tabs on his apnea.  It's been six months since we saw her last.  There wasn't much new to report, since he hasn't had a sleep study in a while.  But we did discuss helping him get a better night's sleep so that he won't need a nap during the day.  Most kids his age have given up naps, but they still need 11-12 hours of sleep.  I sure wish I could get 11-12 hours of sleep a day.  So the plan is to try to get him to bed earlier and hopefully he'll sleep until 6:30 or so in the morning, giving him about 11 hours.  Then he won't need a nap when he comes home from school, allowing him to get a better night's sleep.  I don't know if this will have any affects on his sleep apnea, but it's worth a shot.  But the good news is, the doctor says she doesn't need to see him for a whole year.  That's always the best sign that he is doing well, when the doctor doesn't want to see him for a year.

So that's what's been going on in the Hitt house.  Spring Break is coming soon, and hopefully we'll be able to come up with some fun activities for John.  Maybe a trip to Morgan's Wonderland in San Antonio will be on the agenda.

98 Days and counting

Our story doesn't just begin the day our son, John Thomas Hitt, was born.  You actually have to go back a long way before that, to the day I (mom) was born.  You see, I was born with a congenital heart defect.  This defect is called Transposition of the Great Arteries and it involves the two major vessels of the heart being switched and connected to the wrong place.  After having surgeries as an infant to correct this defect, I went on to have a completely normal childhood.  But sometime in my twenties, I began to have a few difficulties.  So when Tommy (dad) and I decided we were ready to start a family, there were concerns about whether my heart would be able to sustain a pregnancy.  My doctor in Houston suggested that we travel to the Mayo Clinic in Minnesota to meet with a doctor there who has had experience with heart patients who get pregnant.  After being seen by her and many tests being done, it was concluded that I would have a very good chance of my heart sustaining a pregnancy.  That was the good news.  My doctor back in Houston decided that to give my heart the best chance of keeping up with the extra blood volume I would have, I needed a pacemaker.  So in August of 2003, I had my first pacemaker implanted.  After I recovered from that surgery, we were ready to start our family.





Right after he was born in an oxygen hood.

A little over a year later, I found out I was pregnant.  While we were both excited, we both still knew in the back of our minds that not only was there a chance that I would have complications, but there was also a chance that the baby would have some kind of heart defect.  I was followed regular by a high risk OB as well as frequent visits with my cardiologist.  At the 22 week mark, we were able to have a fetal echo cardiogram.  This would look specifically at the baby's heart and determine if there were any major defects.  We were very encouraged when the doctor told us the baby's heart looked completely normal.  The rest of the pregnancy was smooth sailing with no complications.  Around the 30 week mark, I began seeing my OB once a week.  He was concerned with the size of the baby.  He didn't seem to be growing like he should.  In fact, he began to drop percentage wise on the charts.  So at 33 weeks, my doctor thought it was best to go ahead and deliver him, because once he was born, we would be able to help him gain weight quicker.  So on May 24, 2005, we checked into St. Luke's Hospital where I delivered our baby boy by C-section.  He was born at 9:14 am weighing 3lbs 5oz and 17 inches long.




This was taken in the first 6 days.

We knew that because of his size, he would be spending some time in the NICU at Texas Children's Hospital.  We were told the magic number for him to come home was 5lbs.  So in our mind, we just needed to get him to 5lbs and we were golden.  We were not prepared for what was to come.

He spent his first 6 days in the level 3 nursery.  Level 3 is for the most critical babies.  Many of these babies are on ventilators or have major life threatening injuries.  But John wasn't really critical.  He required very little oxygen and never needed a breathing tube.  During most of those 6 days, I was still in the hospital recovering, so it was convenient to get over and see him.




Our first family photo.
 He screamed the first time I held him.

 But after I was discharged it became more difficult and draining.  He was then moved to the level 2 nursery, where babies were less critical and didn't require such acute care.   There was a long adjustment period.  There were doctors and nurses everywhere and we didn't know who was in charge of our baby.  But once we got the hang of the whole resident and attending physician concept, it was just a matter of waiting.  Or so we thought.

An MRI was done to look at the development of his brain and that concluded that while it showed his brain was premature in development, there was nothing abnormal.  A bronchoscopy was also done which showed that his trachea was a little floppy which explained why he had difficulty breathing in certain positions.  We were continuously told that when he got bigger, he would outgrow these things.  So we continued to wait.   During this time, John was also having to learn how to suck.  This was not easy.  He had a great Occupational therapist who worked with him every single day.  She finally got him to use his sucking reflex, but getting him to drink from a bottle was a different matter.  We worked and worked and would get so excited when he would drink a whole ounce.  We used a different kind of bottle trying everything we could.  He required a feeding tube through his nose to keep him fed.



This was the funny bottle that
 he first learned to drink from.

I spent all day, every day at the hospital, sitting with John.   Tommy would come in the evenings and spend an hour or so there before coming home each night.  It was exhausting.  But after 2 months passed and he still required oxygen, we knew something wasn't right.

The doctor was considering sending John home still on oxygen and with the feeding tube.  I wasn't concerned about the oxygen, but the tube scared me.  It came out frequently and had to be put back in.  It always made him gag and cry.  I was scared to death that I wouldn't be able to do that.  The doctors decided to run a few more tests to try and figure out a cause for his continued need for oxygen.  It was determined that he was retaining carbon dioxide.  This led to the decision that he needed to have a tracheotomy.  This news brought about so many tears.  I thought I was losing my baby as I knew him.  But we were told that it would only be temporary.  Once he "got bigger" and was able to expel the CO2, he would be able to have the trach removed.  It was estimated that this would take 6 months to a year. 




  The first time I saw him after surgery.

On July 28, 2005, John went into surgery to get his trach.  They also decided to put in a more permanent feeding tube in his stomach.  This would only need to be changed once a month and would make feeding him a lot easier.  So began the wait.  I can't remember now how long we waited, but it seemed like forever.  My mom and dad had come in to wait with us.  My mom and I got very emotional when we had to hand him off to the nurses for surgery.  It was a very difficult day.  But finally, we saw the doctor, who told us that the surgery went well and they were getting him ready to move him to the level 3 nursery.  We were told it would be a while before we could see him, so we decided to go and get dinner.  When we came back to the hospital, we were finally able to go in and see him.  I was not prepared for what I saw.  He had a ventilator attached to his trach.  In order to let the stoma in his neck heal, he had to be sedated and paralyzed.  They gave him a drug to keep him from moving at all, so that the site could heal.  He had to stay that way for a week, and that was the hardest week of my life.  I couldn't hold him and I couldn't even touch him.  All I could do was sit and look at him.  He was being pumped full of fluid but because he couldn't move, the fluid was causing his body to swell, including his head.  It was all so scary. 

After the first week, his trach site had healed nicely and they began to slowly wake him up.  I was so happy when I was finally able to hold him again and when all of the fluid finally worked its way out of his body.  But now we had to learn to take care of him.  We spent the next month watching and learning how to do trach care and how to suction as well as how to use his new feeding tube.  For a short time he was put in a private room, which was nice.  But one day, the baby in the room next to us passed away and I heard the loud screams and cries that came from his mother.  That tore my heart apart.  I was so thankful that my son was never really that sick, and it helped me realize that no matter how bad we thought we had it, it could have been worse. 




Trach Collar

John transferred from the ventilator, to something called a trach collar, to what's called an HME and finally to the one way valve.  It was so satisfying to see him progress to where he needed less and less support.  He still required just a small amount of oxygen, but at least we knew he was expelling the carbon dioxide.

Finally the day had come.  We had learned all there was to know about how to clean the trach site and how to change the trach.  We learned how to suction and how to use the new feeding tube.  We were given a test on correctly packing his travel bag that would have to go with us everywhere we go.  John had one final test to pass before they would discharge him.  This was the car seat test.  He had to sit in his car seat for 1 solid hour without his oxygen saturation dropping below a certain number.  We were able to put his seat in his stroller during this test and stroll him around to visit all of his nurses and friends in the NICU.  He passed the test with flying colors and we were finally given a discharge date.

For us, August 29, 2005 will always be remembered for 2 reasons.  This was the day that Hurricane Katrina made landfall in south Louisiana and changed the lives of so many people.  But it was also the day John Thomas Hitt was finally discharged from the hospital.  It was his 98th day in the NICU and we were so happy to finally bring him home.  As we were leaving, one of the nurses told me to take him home and keep him there.  In other words, take care of him so he doesn't have to come back to stay. 




Wasn't so happy about seeing the sunshine.

John came home in a limousine of sorts.  Hospital policy said that he had to be transported home in an ambulance, just in case something happened on the way.  Since we lived an hour from the hospital, it was probably a good idea.  So Tommy rode in the Ambulance with him, and I followed behind in the car.  That was the first of a few ambulance rides he would take in his life, but probably the only time we were happy for him to be in an ambulance.

We then had to get use to life with nurses in our house around the clock.  But I found that even with the nurse there during the day, I still wanted to do all of the care giving.  So after the first week, we decided to discontinue the day time nurse and just have a nurse at night.  We were able to get a good night's sleep so I could spend the day loving on my baby boy.  Life as we knew it was over, but we were so happy to finally have him home.




His first smile.

Here we are, almost 13 years later.  What we thought would be 6months to 1 year of having the trach, turned into 10 years.  At 4 months old, he began to have sleep apnea.  We thought it was something that he would outgrow, but he never did fully.  That is the one reason he kept the trach for so long.  On April 22, 2015, John was admitted to Texas Children's to have his trach removed once and for all.  Everything went perfectly as planned, and the next day, April 23, 2015, he became a member of the naked neck club.  The trach was removed and he hasn't looked back.  We have not missed that thing for one single day since.


He continues to be developmentally delayed in all areas of development.  He has a hearing and vision impairment.  But even with all that he's been through, you will never find a happier boy.  He loves everyone and everything and lives life to the fullest every single day.

It has been and continues to be a long journey, but I wouldn't trade a single minute that I've had with my baby.  Tommy often reminds me that he isn't a baby any more, but he will always be my baby.

This is a journey we will be on for the rest of our lives, but it is one that is worth taking.  Every time that he gives me his sweet hugs and kisses just reminds me why we continue to do this everyday.  Our life isn't easy, but it could be worse.  I don't know why God chose us to be the parents of this little guy, but we are glad he did.  I know he has a purpose for us and for John that is far greater than anything we can imagine.  I can't wait to see what that is.  It must be amazing.  So I'll close with a few more pictures from his first year.  Thank you for reading this and thank you to everyone who has gone on this journey with us.  We have an amazing support system of family and friends who have helped keep us sane all of this time.  They have loved us unconditionally and we will forever be grateful for all they have done.



Sleeping in his very own bed.



One of his many funny faces.



First Thanksgiving

Geaux Tigers!



Family Photo