Last week we went to the geneticist who told us that she has done every test available at this point. She said she feels strongly though that his condition is some sort of genetic syndrome, but it may be the first of its kind, and until there are more sensitive tests, or more of the human genome mapped, there is not much more we can do. She is however going to present his case at the annual meeting of geneticist's during a special session where physicians are able to present and discuss difficult cases. Thats right, the top geneticists in the country will be brain storming about our little man- yay!
The week before that a part of his g-button broke, so following instructions given to us in the hospital, My brother in law and I went to the ER to have it replaced (Mike was at work). After about 2 1/2 hours we got tired of waiting so we sucked the broken piece out of the hole you put the feeding tube in with the ultra strong wall suction at the hospital. At 4 1/2 hours the ER doc finally came in and said that the surgeon has to replace it and he was in surgery, so just call his office on Monday (this was Friday or Saturday night). OK... would have been nice to know 4 1/2 hours ago! So, finally on Wednesday (Mike and my 9th wedding anniversary) we got an appt. to see the physicians assistant, who straight up pulled the whole button out then proceeded to tell me it was bleeding due to the "micro-tears" pulling it out causes. Wooo, was this mama hot. I was about to micro-tear him! So, after the new one was put in and we left, poor man was crying and sore for a few hours. Must have been pretty bad micro-tears. Geez, give me a break.
He is scheduled for surgery on January 19th to correct his cleft palate and for another test on his rectum, He is also due to have is testicles brought down, but the urologist and the surgeon both want the other to do it. The surgeon will already be in the OR to do the rectum test but he says he won't do the testicle surgery because he officially saw him for his rectum, not his undescended testicles. Soooo, I just made an appt with him before his surgery with the reason "examination for undescended testicles." I'll just take the excuse right way! I am pushing for this b/c I don't want him to be exposed to anesthesia more than absolutely necessary, and because I don't want him to have to go through two recoveries.
You know, a fellow "medical mama" told me shortly after he was born that I would find my "voice" as far as being his advocate goes. Well, I done found it! I have learned that however genuinely people (doctors, nurses, etc) care, the fact remains that at the end of the day, they leave their work and go home to their life. He IS my life, and I never leave, so it is my job to be his voice. I am not concerned about the surgeons schedules, or being timid and a "good patients mom,"I am concerned about what is best or Dominic. And by George, if that means I annoy the nurses because that is the only way to get something done, then so be it... I'm officially "that" mom. And in case you are not aware of what "that mom" means, it is those moms who make life difficult for the hospital staff. Now I see that it is not that they are really mean, it's just that frequent contact with doctors, and office staff, and insurance companies, and supply companies puts you on the defensive. You almost have to be politely aggressive to get something done. I have a million examples but I will spare you.
We have a pulmonology appt. Friday and that's all for this week.. then the rest of January is busy. As for life outside of doctors offices, Dominic is such a sweet, happy little man His smile is contagious. He just loves hearing his brothers and sister play around him, and he is such a cuddle bug! He is rolling from his back to his side and once he made it all the way over to his tummy (he was just MAD!). Here is a pic of Sweet Mary Grace loving on her baby Bubba: