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.

Birthday Party

Today, we were able to celebrate John's sixth birthday with a fun party.  It's always a challenge for me to decide what kind of party to have for him.  He isn't able to do the typical parties that kids his age have.  I have been fighting the trend to have a fun jump for his birthday.  While all of his friends would probably have the best time, John really couldn't participate.  Sure I could bring him into one, but he has proven in the past that he really doesn't like them.  He ends up crying until I take him out.

I have also been hesitant to have any kind of "wet and wild" party.  He could get in a baby pool, but because of his trach, we have to avoid getting him too wet.  So sprinklers and splash pads are out for him.  I did lean towards doing something like this in our back yard and letting him hang out in a blow up pool.  But ultimately, we went with simple.

We decided to have his party at The Little Gym of Katy.  This is a fun place that does tumbling and gymnastics type activities as well as plays music and parachute games.  They basically will customize your party for the age of the child.  I have to say, this was one of the best ideas we have ever had.

Not only do all of the kids have lots of activities to keep them busy and to help burn off some energy, but the staff at the gym are great.  Our small group had two activity leaders who took care of everything.  They organized the gym activities and then had the party room all set up for cake and ice cream.  They supplied all of the balloons, paper goods, drinks for the kids and even the party favors.  All we had to do was bring the cake.  Sounds easy right?  Well for most families that would be simple.  But for us, we ran off and left the cake at home.  The only thing we had to remember and we forgot it.  We didn't realize it until it was time to sing happy birthday and blow out the candles.  So while Tommy quickly ran to the grocery store to buy a ready made cake, we broke out the ice cream cups.  We even put his number six candle in his ice cream so everyone could sing to him.  Nothing like improvising.

Except for that one little screw up on our part, it was a very successful party.  And the best part was we didn't have to do all of the set up and when the party was over, there was nothing for us to clean.  We just packed our gifts and came home.  It is one of the least stressful birthdays we have ever had.  I highly recommend this place to any child having a party.  The staff was incredible and all of the kids seemed to have a great time.

Our birthday boy was pretty pooped tonight and went to bed early.  He should have some pretty sweet dreams.  Here are some pictures from the party!

Welcome Sign

The gym

Group Circle.

Center of the parachute

Playing on the floor

Birthday Pose

Air Track, he didn't like this so much.

Party Room

Candle in ice cream

Good store bought cake.

Group Photo

6 Years Old!!!

Where have these past 6 years gone?  It seems like my baby boy was born just yesterday, but instead, he turned 6 years old yesterday.  I can't believe how fast the years have gone by.  He went from being a tiny, scrawny little thing, to a very tall and adorable 6 year old.  And he is the light of my life.

He has a very distinct personality.  He loves to crawl around the house and get into trouble.  He loves his music too.  He seems to have a pretty good rhythm too as he bounces along to the beat.  He loves to swing and rock in the chair.  He has the funniest facial expressions, which in turn prompts me to make ridiculous faces back at him.  He loves to cuddle and give hugs and kisses, and my favorite time of every day is when he curls up next to me in the recliner and falls asleep.  Yes, he's a lot of work to take care of, but he's worth every minute of it.  Even the sleepless nights are worth it.  We are so blessed to have this little boy in our lives.  He teaches us something new every day.

Yesterday, was also his Kindergarten Graduation day.  Not only can I not believe that he's six, but I can't believe he has completed his first full year of school already.  He made so much progress this year.  It was fun to see the little program that the teachers and kids put on yesterday.  And when all of the kids were singing the song they had practices, he watched them all closely and took in every second of it.  He's made some sweet friends and has captured the hearts of his teachers, just like he has captured our hearts.

This weekend, we are having his birthday party with a few close friends to celebrate his 6 years.  It should be a lot of fun.  It's always a fun day for us.  And it's nice to have the family gather together to celebrate.

So let me just say, Happy Birthday Sweet Boy!!!  Mommy and Daddy are so proud of how far you have come and we look forward to the years ahead just to see what God has in store for you.

Here are a few pictures from his last 6 years.



This picture show how tiny he was.



Peaceful.
























First Birthday!



Chip off the old block!
























2nd Birthday



He loved this jumparoo.
























3rd Birthday!



Graduating from ECI





















4th Birthday



One of my favorite smiles
























First Day of Kindergarten



6 years old!

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.

Update

Just wanted to post a quick update to last night's sleep study.  I've had a few people ask how it went.  The answer is, it went well compared to past studies.  The prep process, while annoying, went as smooth as it can.  John did not get upset.  Once we turned out the lights, he fell asleep pretty quickly.  For the most part, he slept pretty well.  I didn't sleep as well as he did, but I did sleep some.  I got up a few times to check on him, but I didn't really need to turn him or adjust him in the bed.  I was happy about that.  I got the best sleep probably between 4 and 6 am.  Then it was time to go.

I got him home just after 7:00 and Tommy and I gave him a bath and washed the stuff out of his hair.  He ate breakfast and then he and I took a nap.  Well, really he took a nap and I just dosed off and on for an hour and a half.  Then I took him to school.  Of course 2 hours later I got a call from school that he had thrown up (just like he did on Monday) and I had to go and pick him up.  However, I was in the middle of an appointment with my favorite Optometrist, so it took me a while to get there.  He isn't actually sick.  Something he is doing or that is going on around him is making him throw up.  Either that, or he's making himself sick because he wants to come home.  Either way, he's going back to school tomorrow.

Thanks to everyone for the thoughts, prayers, emails and text messages to let me know you are thinking of us.  We hope to get results in the next week or so and I'll let you know when we do.

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.

Happy Mother's Day!

I know I am late, but I want to wish a happy Mother's Day to all of the mom's out there.  It really is a special day.  We all know that mom's do so much for their children everyday, and there should be more than one day a year to recognize that.  But in true mom fashion, we settle for just the one special day.  Sometimes, it's nice to stretch into a weekend though.

The past few Mother's Days have been pretty low key in our house.  I don't usually get to go and see my mom because we go at Easter, and typically Easter falls so close to Mother's Day.  It's hard for us to make the trip twice in a short period of time.  That was the case this year, but I took a different approach.  I invited my parents to come and spend the weekend with us.

We decided to celebrate on Saturday.  I knew they would be leaving Sunday afternoon to go home.  I also know that getting into a restaurant on Mother's Day after church, would be nearly impossible, unless we wanted a two hour wait.  Saturday, I took my mom to have a mother/daughter pedicure.  The salon I go to has three different levels of pedicure.  I usually just get the cheapest one.  But I decided since it was for my mom, to get the top of the line.  It was very nice and relaxing.  Funny enough, we both liked the same color polish, so we now have matching toes, although my mom's feet are way bigger than mine. (Sorry mom)  Then we had a surprise visit from my sister-in-law and niece.  So the four of us plus John, loaded the car and drove about 15 minutes to our favorite snow cone stand.  My mother is from New Orleans and for whatever reason, New Orleans has the best snow cones.  It's nearly impossible to find a place that is as good.  They also don't call them snow cones in New Orleans.  They call them snoballs.  So when I found a place near here that sold "New Orleans style snoballs" I knew they were genuine.  So it is a treat to her to have a good old fashion snoball.  After we left the snoball stand, we went to the mall.  Mom was looking for something for her upcoming trip to the Grand Canyon.  If you know me at all, you know the mall is not my favorite place.  But I was a good daughter and took her to look for what she needed.  Unfortunately, she didn't find what she was looking for.  But it was fun to spend time together.  That night, my wonderful husband cooked us a delicious meal of steak and shrimp along with baked potatoes.  We put John to bed early and were able to enjoy a nice quiet dinner out on the patio.  It was a beautiful evening.  My husband also surprised me with a brand new coffee maker.  I'm not a huge coffee person, but I do enjoy a cup every now and then.  I told him not long ago that I wanted a new coffee maker, one that didn't have the karaft.  I was sick of cleaning that thing.  So he got me the new fancy Keurig coffee maker that brews many different kinds of coffee.  I love it. and was happy to enjoy a delicious cup this morning.

Sunday we went to church, then came home and relaxed.  I tried putting John down for our regular Sunday nap, but he was having none of that.  So he and I laid in bed and watched some cute videos on YouTube.  He loves watching videos on my iPhone.  That afternoon I took him on a wagon ride, which is one of his favorite activities.  Unfortunately, he is getting too big for his wagon.  He has already broken one of the seats and made it into more of a recliner.  So pulling him for too long makes my back hurt.  The ride was short, but the weather was nice to enjoy.

So all in all, it was a successful and relaxing weekend.  I'm glad I got to spend the time with my mother and of course I love all the time I get to spend with my son.  He was more than thrilled to spend time with his Gram and Pop Pop.  That boy loves his Gram and I just about don't exist when she is around.  It's so fun to watch him with her.