I’m embarrassed to admit that I actually had to go and check the calendar to know what day of the week today was. Time just flows kind of funky when you are in the hospital.
I came home so I could see Rigel’s play last night. He did a wonderful job in the Merry Wives of Windsor. This afternoon I will go back up to PCMC and then Reed will come down and go watch the play. It is important that each night there has been family in the audience making goofy faces and blowing kisses to Rigel when he is on stage. hee,hee
Yesterday we met with an absolutely amazing surgeon. The spirit bore witness to me right then and there that this was a man I could trust Parker with. He had read all of the research concerning the issue of an Imperforate Anus in a child with Down syndrome verses a typical child. He knows Dr. Levitt from CCHMC and has many times consulted with him before a surgery. He was trained, in person, by both Drs. Pena and Levitt.
I’ve checked him out pretty throughly and feel very confident that he, indeed, is our man.
Parker is now back on 100% feeds at about 46 mls per hour. We are trying to work him back up to three bolus feeds by gravity per hour and then continuous feeds at night.
The difference is that we are about to add a colorant (koolaid?) to Parker’s feeds to help us see if he is aspirating his feeds. We will know this if, when he coughs, the colored feeds come through his trach.
If this happens then we are on our way to Nissen and G-Tube City.
If this doesn’t happen then while we are on our way to G-tube City we’ll be taking a U-turn at
As in fixing Parker’s tush.
Parker’s blood loss through his stoma is causing great issues. It isn’t good to be in need of a blood transfusion as often as he is. It mucks with his PH values. It mucks with his energy.
And now that it has been identified that Parker, did indeed receive the wrong stoma, we know that his feeds are coming out of him in the form of stool way too early. He is simply not getting enough nutrients from what he eats. Plus this stoma has prolapsed to many times the size it should be. This is adding to his failure to thrive issues.
When the surgeon was told how close to Parker’s anal opening his bowel had been at birth, he was incredulous. He very well could need only a very simple surgery (as IA surgeries go) to have his plumbing corrected. And since it is thought that there is no fistula, his outlook after this surgery could be pretty decent.
I’m in a bit of a state of shock. After reviewing previous tests and performing a few more we may discover that we need to reassess. I know that. But I will also feel much better after this has been completed and we have a better game picture.
But this being the weekend we are just treading water until Monday. This is the stuff that can drive a Mom crazy.
So we will for sure still be in the hospital all through next week. And the week after that, perhaps.
We’ll keep you updated.
You keep praying. Pretty Please?