Thursday, December 9, 2010

It's a Great Day

Isn't it nice when things go well?  Today was one of those days.  We met the esophageal specialist and what a blessing; she understood and had worked with RDEB at Stanford in California.  She knew more about EB than I did and I can't say that about most of AJ's physicians.

Dr G was more than ready to do the procedure and actually suggested that we do it today or tomorrow.  We are not ready to jump that quickly (it means an overnight stay in the hospital) as I need to plan for the care of the other kids at home.  We are shooting for early next week - Monday or Tuesday.  She will be able to thread the balloon through his GJ tube and up into his esophagus.  She will inflate the balloon at the stricture and gently force the esophagus to open up. She actually believes that he has two blockages and they will check with barium to make sure that everything is open before she removes the balloon.   She said the actual opening takes about two minutes - but the prep for the procedure is longer.  If his stricture is really tight, it is possible that she would only open it part way and go back in three weeks later - this would be safer than stressing his esophagus and risking a tear.

More good news; it will be done in Interventional Radiology and that is where he goes every six months for his GJ tube replacement.  They know him well and are learning to properly care for his special needs.   We are pleased and blessed.

AJ's 3rd Birthday is December 15th and if all goes as planned; he will eat ice cream again! Yes! 

Last night he was awake in the middle of the night and choking on his saliva.  We are so glad this will be taken care of and that it can be done locally (verses traveling to Cincinnati) since he will most likely need the procedure done every 3 months to a year.  We decided that each time he is scheduled to have his GJ tube replacement (every six months) we will first check to see how his esophagus is doing and if he needs a dilatation; we will do them at the same time.

Thanks so much for your prayers.  I will update again when I learn the date of the procedure.

Psalm 73:28 (New International Version, 2010)
But as for me, it is good to be near God.
I have made the Sovereign Lord my refuge;
I will tell of all your deeds.


1 comment:

  1. Its great to know that you found someone who has experience with E.B. . I am in Canada and my son is 22 years old. While he was a child he was seen in a childrens hospital in Toronto. The care was outstanding. When he turned 16 we had to find our own alternate care and have many Drs. who think they know what to do but really have had no experience with E.B..It has been scarey and so now we wait til everything is almost an emergency because the hurt and damage that these Drs. cause is unjust.My son has R.D.E.B. It breaks my heart every day the pain he goes through. Good luck to you and your son.