ENT!

Today was the postponed and postponed again ENT visit. Or the Ear, Nose and Throat specialist. Why did we go you ask? Back in December we had a very lovely sleep study at Ty's pulmonologist and sleep doc. She was not impressed with Ty's ability to stay oxygenated at night. She said she felt he had sleep apnea. Part was centralized ( which is bad.. oh so bad) but the moajority of it was obstructive. Which if you are gonna have apnea that is the "better" one to have.

Centralized apena means that some where in his brain is a problem that is not allowing him to keep breathing. But the obstructive usually means that the child has something that we can HELP for him to sleep.

So off to the ENT we went. The ENT that we went to was great. I was pretty impressed with him. His bedside manners was very impressive. He was very kind to Tyler. He was VERY gentle and didn't seem to shocked to see that we were sitting there.

Generally, in specialist appointments ( especially since the depo lupron) that I find myself over emotional. This time.. NOTHING. Just had a lot of questions. I think I felt like they wouldn't come out with this SHOCKING and horrific problem that we couldn't fix.

As we did our exam ( and I say we because ME gets to hold down Tyler) Ty did pretty well. He didn't freak as much with this doctor as he did with his pediatrician yesterday. There was apparently lots to see and talk about.

The "funky" ear from yesterdays visit is in fact infected. Which means that in 4 years Ty has now had 2... THAT IS RIGHT 2 ear infections all in the last six months. Because he didn't get them when he was little they are concerned that he has a continuation of fluid going on behind his ear. So Ty is on antibiotics AGAIN and ear drops.

Next up were those pesky tonsils. Tyler doesn't get sick that often. So it was a little "shocking" that he needs his tonsils out. The tonsils at first glance look great till he saw that they sit down lower than "normal"and the bottom part of his tonsils are so big they almost touch. Which means that OUT they come.

For most ( me included) I thought ok lots of kids get their tonsils out. In a few days he will bounce back and be fine... Oh no. So apprently with kiddos "Like Tyler" we will have to be for 24-72 instead of the normal same day. Because we are cutting into his throat we are opening up a HUGE risk for a shunt infection. So prophalaxis antibiotics will be givn before and after. Chances of him landing BACK into PCMC for dehydration is more than 50 percent because he cognitevely does't understand bribery in orer to stay hydrated.

Last but not least, though we need them out in a bad way Tyler is at HUGE increase risk of any "elective" surgery being done during RSV and Hn1n we get to wait till it is over. He has like EVERY risk factor for bringing home more than he went in with .

So yes, Ty needs his tonsils out. No we won't be doing it soon. Yes we will have to stay over night. No I don't really want to. Hopefully it will answer and solve some of Tyler's intermost secrets.... WHY DOES he NOT sleep!?

The results are in

Our sleep study results and follow up was this past week. I have decided that I really like this doc a lot. She was very honest. But first, a little of the first of the week.

On Sunday Dallas woke up with a horrible sore throat. I decided to take Tyler out of the house for a few hours and let Dallas sleep and then we took him to the instacare AGAIN. I was really hoping that it was "nothing" and he was just feeling like crap and feeling a little stressed. But sure enough the quick strep test was positive AGAIN. I was so so mad. We just got done with Antibiotics from a week or so ago. And here we were again.

So we assumed that there was a carrier somewhere. Monday Ty and I went Christmas shopping and headed home. Got a text message from Aunt Sheena that she was not feeling well and she was heading to the doc. A hour later a text that she was positive for strep.

We learned that strep has a carrier and someone with no tonsils can't carry but can get strep. I am the ONLY person in the house that has no tonsils so we assumed it was Tyler the toot.

Tuesday we talked to ped, got scheduled for his last H1n1 shot and we thought we would test him to see if it was him. He isn't or wasn't sick and we waited for the rapid strep test. Guess who was positive? Yep toot face himself.

2 weeks of antibiotics to see if we can't kill off the germ and off we went. For the first time in his LIFE he will actually take it without throwing up. Did you know they can flavor augmentin strawberry?

Its seems his appetite has returned so who knows maybe he was not feeling well. But he has been much better.

His sleep study results came back. And the honest doc said, he doesn't' sleep a lot. I am sorry there isn't anything we can do.

Ok.. that was the gist of it.. The details:

Ty has awesome REM sleep the first 3rd of the night. He falls asleep great because of his sedation meds. He enters into deep sleep pretty well. Then comes his arousal. Around 3 am he starts arousing from periodic limb movment ( about 5 an hour) and ( get this) obstructive sleep apnea.( he wakes up about 8 times an hour with apnea) At first she thought it was his tonsils but she was not convinced after seeing the rest of the results. He wakes up when he can't breathe. He then comes looking for mom. She thinks that his air way is floppy. That taking out his tonsils will be like taking out part of the dry wall. She really feels like it would be a bad idea. She would really like him off his sleeping meds but at the same time anything she gives him will be metabolized in his liver. He has to have meds or he would be up all night.

He gets generally around 440 minutes of sleep that is about 7 hours. A kid his age should be sleeping between 10-12 hours to help him grow and develop. She is glad we have been putting him in our bed because apparently hearing someone else breathe can keep a kid alive.

I was horrified to see that I was sedating my child and he can't breathe. Here we are sedating and suppressing his breathing and yet he still doesn't sleep. I am at a loss but thankful he has been safe.

So we are getting an ENT consult, not for sure taking out his tonsils but getting them looked at. Seeing if we can make him safer. We are letting him out grow his dose and see if there is anything else we can do. We are going to be checking with his neurosurgeon about a ridge on his head that makes me a little nervous and make sure that his little cute head is still growing. I will be devastated if we are having more issues with his head growth.

Next week ( OK Wednesday) we go in for his phenol shots and serial casting. It was pushed back a day. My tummy is in knots till we get it done. Lots of prayers for Bubba!!

Sleep Study- in pictures

The long awaited sleep study was last night. I am exhausted tonight so that explains how well it went. Right!~
We left extremely early for the sleep study because it was snowing. No it was a fast moving blowing and freezing semi-blizzard. Dallas and I decided that I would take Tyler alone because 1) Dallas has his own set of sleeping issues. 2) What was the point? There is only one other bed and if he stayed home I could sleep in the morning ( after) and 3) why pay for 2 cars to drive up there. Totally pointless.

We got there pretty early and the lights were off and the door was locked. I was horrified that driving up there, keeping Ty up past his bed time and then not having anyone show up was going to make me SUPER mad. We need to have the right meds before our procedure in December.

At 8:30 the tech showed up and we were the only ones there for the night.

The rooms were very nice but the beds ( though they looked nice) had mattresses far below hotel standards. I mean, if the room looks nice at LEAST make it a pillow top. But Ty was pretty chill at the beginning. He was watching a movie and laughing until the tech came in.

I have no photos of the ordeal because it required pinning, sitting and basically holding my kid down in order to get him to allow the tech to get him to put all the crap on that they need. I seriously can't fathom how the heck they expect anyone, kid and adult to sleep with this crap on their bodies. We were lucky to get his meds in before he was crying in hopes that he would crash as soon as the stuff was over. It took about an hour before he finally crashed.
(Sorry about the blur quality but it was dark) That is the amount of wires that were stuck somewhere to his body. Not kidding. He had 3 on each leg/calf. 4 on his back 9 on his face 4 on his head, 5 on his chest and 2 under his nose ( not pictured) They had a nasal cannula and a nose pressure thing ( the 2 on his nose) that they had to wait for him to be deep asleep because they knew he wouldn't tolerate them to put it on before hand. And on his foot he had a foot probe for oxygen and on his chest 2 straps. Yep.. and he was suppose to sleep. Oh! and a microphone and a monitor for his heart. Yeah not kidding

So of course the results aren't in yet. He feel asleep around 9:45 pm and slept soundly till around 11 or 11:30 where he was up around 4-5 times ( not sure how many, I lost count around 3) and at 4-4:30 he got restless enough he was sitting up. And at 5:00 he signed all done. I moved into mom cope mode and moved him into my bed where we put on a movie and "tried" to sleep and the tech came in and said it was pointless to keep him there if he wasn't sleeping and we then combined efforts to pull off the 30 MILLION probes on his body. Then off we went. He cried taking them off almost as much as putting them on!

We went to see if Smith's was open in hopes to score a donut but they aren't open till 7 and it was only 6 so we went to McDonald's and got us a yummy Breakfast ( I know, so healthy!) but it was such an early morning. Ty and I ate ate breakfast in quiet. Then watched a few movies before we went and bugged Dad! At around 7:30 I couldn't keep my eyes open any more. Dallas saved me and took over the parenting duties and I slept ( with weirder dreams than I care to admit) and I resumed the parenting duties a little later.

Through out the day Ty didn't nap and tonight he was DONE and so were his parents. I think emotionally I was done as well. As I was talking to Dallas last night I thought " This really sucks." I honestly wish a million times over that we didn't have special needs. That our live was mundane and boring where the most dramatic thing that happened was so ordinary that people like "us" look in envy. Instead, I am thankful what I have learned but really wish for Tyler's sake and my sanity most days and Dallas sanity, that just once it would be "normal."

We are so thankful for all that Tyler has taught us. We can't express how much he means to us. Special sucks! But we have a special kid regardless of his needs. He rocks!

And for the record, last night was pretty typical of how our lives have been at night for about 4 years. I think in all honesty he has only slept through the night maybe a handful of times but I always wake up alarmed around 3 am because he hasn't showed up in our room or hasn't cried all night and I panic. Also he does get sedation meds at night. And they are heavy duty ones and NO they don't work and no we realize that it isn't normal.

Any questions after the long long post!! GOOD.. just kidding. Let me know!

Tomorrow

Tomorrow we have a sleep study. After 4 years of him not sleeping well we are going to have someone look at him. After going through the paper work I am not sure how he will sleep with the wires and stuff but we will try. I have a feeling it is going to be a very long night.

Please pray that we can do it and that his sensory problems will be at bay while we get the probes where they need to go and that he will be watched over and protected and that he does his funny leg things in his sleep.

I love sleep. I hope he does to some day