Gabriel Updates: Mom notes

Today was a VERY rough day. I was hoping the last few days would be calm. Gabriel has a nasty sinus infection and Isabella has a double ear infection. I was very frustrated last night when I went to the pharmacy and was told that Gabriel's antibiotic prescription had not been called in. His poor eyes have been crusted completely shut. When I got to get him up he can't open his eyes and he panics. What an awful way to wake up!

I called the doctors office to see why they did not call in the script yesterday to be told that they had in fact called it in and what time they called it in at. It was all a mix up on the pharmacy's end. Gabriel could have had two doses in by the time everything was figured out.

Thank goodness antibiotic is started. My poor kiddo coughed up both of his last meals due to the drainage down his throat. When he vomits, the vomit comes out his nose through his sinus's which I am SURE hurt quite a bit.

Gabriel's classroom paraprofessional came today to finish her training. I debated not taking Gabriel in because we were up well past 2am. Gabriel could not lay down, every time he did he started to have coughing fits from all of the sinus drainage. (We may have some things figured out about the sinus issues, more about that later.) I knew we had to get in there and finish the training as long as Gabriel could handle. It is so important to have the training at the program. I am able to be a trainer for Gabriel (they prefer not before Gabriel has been out of the program for two weeks) but when you are at the program you get training that I could never do. Having the team there working with each individual is such a big deal!

Gabriel made it though the first meal with out any issues. He has some new directions with his feeding for his safety (more about that later as well) the team was great about teaching the paraprofessional what they do and why. Gabriel went to bed after his first feeding.

I received a note to call Gabriel's teacher when I had a chance. She had a feeding with the director and wanted to discuss what they decided. My mind began to run, this could go many different ways. I called his teacher to find out that they were in the process of trying to find a person to come into the classroom for a hour each day to feed Gabriel (NO, NOT THE ONE WHO JUST HAD THE PRECIOUS TRAINING). I don't mind who is in change of feeding Gabriel as long as he is fed correctly. The school has known all year that Gabriel would be in this program and would need to be fed. Why are they just NOW looking for a person and what is wrong with the person we just had trained?

We were only allowed to train two people besides Gabe and myself. The program does not want too many feeders so they limit how many people are trained. We had to pass up any people who could help with respite, due to Gabriel being in both daycare and school. I am hoping this spot was not taken up for not.

After I got off the phone I was pretty frustrated. I spoke with the psychologist about my concerns. We are not sure why the school is suddenly looking for someone. She is concerned about the training as well. I will shadow Gabriel Thursday and Friday but that time was to make sure things are completely in place not training. The other thing is that training a new person takes at least 6 feedings. Gabriel only has one feeding at school a day so I would need to be off work 6 days. They have to find a person as well. Why can't this person come into the room to help parapro while the trained person feeds him, we don't have an answer to that either.

Good news, in my talk with the psychologist Gabriel is going to have some pretty impressive discharge paperwork. Right now he can be in the room with the other children at daycare and students at school during his feeding. They believe he will very quickly transition to being at the same table as his classmates. By very quickly they are thinking a matter of weeks. They believe that at the end of the next 8 weeks we will only need a trained adult and a timer for each feeding. He can sit where ever he wants as long as the adult is able to feed him. This of course will all depend of Gabriel. But judging on how he has been so far though this process he is very very likely to be just fine with this process.

I got a call this evening that they are having the playground aid coming into Gabriel's classroom to feed him. I did not catch the call and only got a voice mail sadly.

I will be calling the school in the morning and seeing what we can work out. I am sure things will work out just fine in one way or another. It is just stressful right now. The road would be pretty boring if there wasn't a bump here and there.

On to Gabriel's swallow study.

During the swallow study the therapist was able to see food coming out Gabriel's nose. She can see it coat his throat and how it is getting into the sinus's. There is not much that can be done from a therapist point but she sent her report to Gabriel's ENT as well as a copy of the study so that he can see what is going on. Gabriel even did a famous Gabriel throw-up during the study where massive quantities of stomach contents come out his nose in a spray. We will see what suggestions he has. This is a missing piece to Gabriel's sinus troubles! The little flap that is to keep food out of his nose is placed lower than in a typical anatomy and therefore does not always close correctly. This may be adding to his food in the nose issues.

When Gabriel ate you could see the food refluxing up his esophagus. It was pretty interesting. We saw some large issues. Gabriel may be eating any foods that are put in front of him but they are not all doing good for him. When he eats a 'sticky' or 'thick' puree his esophagus is unable to work it down to his stomach effectively. The food stacks up in his esophagus until it gets high enough to cause him to gag and ultimately throw up. To help stop this build up we are putting pureed pears into his thicker or sticky foods to help thin it out so it goes down to his stomach better. Due to low muscle tone Gabriel's esophagus is not as strong as others are. It is also weaker due to not having to deal with this quantity of food before.

Goodness, my little man is still silently aspirating. This is pretty scary. Long term this can destroy lung tissue, cause chronic respiratory issues, just create a mess. Oh boy, oh boy... Gabriel is going to be on honey thick liquids for quite a while at this point. That means he is going to drink liquids that are extremely thick to help ensure that he is not getting any into his lungs.

So the swallow study was extremely informative but frustrating all in one.

Speaking of frustrating, my children decided that the bath tub was bored and instead of taking a bath they wanted to help entertain the bath. I ran downstairs to grab the Johnson Vicks bubble bath only to find this upon my arrival upstairs.