First of all, Rhett would like to wish all of his friends, a Happy Valentines Day!!
He loves you thiiissss much!!
It seems his palate is significantly enlarged, which is causing his obstruction. Obviously with his apnea being so severe, it is wreaking havoc on his body. Apnea and Reflux are two of the biggest factors in Pulmonary Hypertension and children with Down Syndrome.
Rhett's pulmonary pressures continue to go up. His heart is continuing to enlarge. Somethings got to give.
So...Here's the deal. We only have two options to get this apnea under control right now.
1. They can do an operation on him called a Uvulopalatopharyngoplasty, or UPPP for short. What they do is go in, remove the Uvula...(the dangly thing in the back of the throat), the tonsils and adenoids, and cut back the soft tissue at the back of his palate to make it smaller. This operation takes only about 45 minutes, but the recovery time is hard, and he will have to be in the PICU for a while where his pulmonary pressures are so bad.
2. We do a trach.
With that being said, this is a fairly new procedure that they are doing at our hospital. (It is done in adults all the time, but not a whole lot of pediatric patients.) The ENT said that they have only done it on 8 patients in the last two years, and only one of them had Down Syndrome, and since children with Down Syndrome have different facial structures, and airways, well there really is no number to give us for a success rate. Which means he may end up getting trached anyways.
Can you hear me FLIPPING out yet?
So here is what we are doing. We are going to go ahead with all of the testing for the reflux, and meet with the surgeon who will do the nissen and G-tube if needed. They rescheduled his PH Probe to the 19th rather than today, because the hospital is full to the brim, so bad in fact that they are triple bunking kids.
So we will be admitted on Tuesday for the PH probe, be released Wednesday, then go back up on Friday for another MRI under General Anesthesia. Then we will still do the Upper GI on March the 3rd, and meet with the general surgeon.
The thing is, is that if he does need the Nissen and G-tube we have to decide which surgery we need to do first. They can't be done at the same time, because it is just too much for his body to handle, especially where his heart is already stressed right now, and his lungs aren't in the best of shape.
I think we are going to go ahead and take care of the airway stuff first. I mean it makes sense to do make an airway better before treating reflux right? Oh, and speaking of reflux, this UPPP will make his reflux worse. So as soon as he is healed we need to be on top of the reflux issues.
Either way, we are headed for surgery sometime next month or the first of April. By then RSV should be winding down, and the PICU won't be crawling with cooties.
As much as I hate to do this to him, I don't want to loose him to the Pulmonary Hypertension, and if this is going to help him live a better quality of life in the long run, then that is what we are going to do. Even if it does mean a trach. I guess there are worse things out there, I just hope and pray that we don't end up with one. I don't even want to think how far back it would set him in his speech that I have worked so dang hard on with him. Can you imagine not hearing him say "cool" anymore? Sniff......
I figure, by the way, that he is going to live forever. With everything we are fixing now, he is going to be the healthiest old man alive. Don't you think?
Other than that I am trying to keep his oxygen on him, but have had to take it off the last couple of days. His skin is just breaking down, as you can see in the pictures, and it needs to heal.
All in all, he is happy and you would never know he is as sick as he is. He is getting into lot's of trouble, and I am constantly telling him "No". He has even started tattling on himself when getting into something. If I am in another room and I hear him saying "No, No", I know I better get in there quick.
I got these jammies for him the other day. He has outgrown almost every set of jammies he owns. These are a size 2T, and I thought he would have room to grow in them, but I guess not....little butter ball......anywho I thought they fit his personality lately!!
Nothing But Trouble, but oh so precious!!
Neener, Neener, Neener!! This is his new favorite naughty thing that he has learned from his two older brothers and sister!!
This is a picture of him and big sister Chloee who is 3 years older than him, and only weighs 10 lbs more. He is all MEAT!!
And don't forget to vote for Chloee to win tickets to Disney Princesses on Ice. Click HERE for the instructions on how to do it. It's really easy!!