Tuesday, December 13, 2011

4 Docs in a week... Phew!

So, I had planned on writing several small updates last week giving the low down on all the doctors appts but lo and behold, I just didn't get to it.  So, last week we had 4 doctors appts... one each day.  I will give you the abridged version.

Monday we saw the urologist.  Can I just say WHO in the world wants to become a urologist?  Anyway, he has to have his testicles brought down, but if the vessels connected to them are not long enough, they will have to take them out.  That totally freaks us out so we pray, pray, pray they can just be brought down.  If they do have to take them out he obviously would need testosterone replacement his whole life.  The thing about the testicles is since he was born with them in his tummy (undescended) he has a 1 in 100 chance of getting cancer in them as an adult.  A normal male has a 1 in 3,000 chance, so we have to watch him really closely.

Tuesday we saw the Pulmonologist and everything checked out well.  Since his main problem right now is the breathing issue, she is sort of our main point of contact.  Nothing too exciting there, we are just keeping him on all the same settings.

Wednesday we saw the general surgeon.  We had to go to a new surgeon because the one who has done his two previous surgeries has left Cooks... have no idea why.  We went to talk about the problem with his rectal sphincter.  The GI doc wanted a second opinion so we went to him.  What I gathered from that appointment is he doesn't really think it is abnormal (I disagree) but he wants to repeat the test that was done a couple of weeks ago where he stimulates it with electricity to see exactly where it is.  Then he kept talking about a colostomy bag and he sort of lost me there.  He was talking about in the future if he is always going to be incontinent and have this terrible skin break down he has that a colostomy bag is something we might want to think about.  Seriously, yes, that's all we need, a bag attached to his stomach that he "goes" in.  No thanks.

And finally Thursday we went to the Retina Foundation in Dallas.  He had a test called a ERG where they put these really thick contacts on the eye then cover them with this wand that flashes red lights in the eye.  There is another electrode on the forehead that picks up any signals the brain is receiving from the retina.  This test came back normal.  The PhD that was performing it (this is in her research lab) said this test is comprable to looking at a city from an airplane.  It can see the whole city as a unit but you would not be able to see problems individual houses had.  So, in general his large scope retina is normal, but this test doesn;t tell us how much vision he has, just that the signals are getting from the retina to the brain.  What I am concerned about is what the brain is doing with the signals once it gets there.

OK, so that's out week in review.  See, aren't you glad that I didn't give you daily updates?  We only have 1 doctor appt this week, and that is today at the Pediatrician for his vaccines.  I hope you have a good rest of the week!

He is perfect

The kids helping me give him a bath last night...
We had to be VERY careful about not getting water in his stoma,
which the kids did really well at!

Sweet Mary momma-ing baby D

Thursday, December 1, 2011

Testing Both Ends

Poor baby Dominic had a procedure yesterday under anesthesia where they looked at his GI tract from both ends :(.  A couple of weeks ago we went to see the GI specialist (remember the one from Africa.. love him!) and he was concered about his anal spincter and his constant diarrhea (dumping).  So we went in for a flexed sigmoidscopy and a pelvic exam but before he was taken back they tacked another procedure onto the "to do" list, a EGD (or Esophagogastroduodenoscopy for all you nerds out there).  This is where they insert a small camera through his throat down his esophagus, through his stomach, and into the beginning part of his small instestines, called the duodenem.  They were looking to make sure his sphincers that are between his esophagus and stomch and between his stomach and intestines were working fine.  They both looked good but he did see some irritation of the lining.  He took a biopsy to check the enzyme levels, to make sure he has enough enzyme to digest his food proerly (another potential source of his dumping). 

From the other end, they did a colonoscopy (ok all you 40+ year old men, man up..., if he can do it, you can too!) They were look at his colon (obviously) and his rectal sphincter. They also did another test where they put little elecrodes on his muscle of his sphincter to locate the muscle of it.  His tissue in his colon was inflamed, a sign of allergies, so they took another biopsy.  The GI doctor felt pretty certain that his anal spincter is not in the right place, which is causing it not to close as tightly as it should.  He wanted a second opinion from the general surgeon though so we are scheduled to see the surgeon next Wednesday.

Poor little man was so wiped out from all the aneshesia he slept all day and all night! He woke up this morning about 6 am and was wide awake and happy til 12:30 this afternoon... just in time for his therapists to come.  We had all 3 therapies today because the procdure yesterday messed up our therpay schedule. So, first was speech, and like a typical speech therpist, ours is so soft spoken, bubbly, optimistic, and sweet.  I swear, I think you have to take a sweetheart test to get into Speech Therapy school- I've never met a mean one! Then we had PT with a therpist who has been practicing longer than I have been alive,  She is so good, I really like her.  And to top things of, she used to teach Neuro at the PT school I went to.. before my time. Yeah, that's right, I have an ex-PT school Neuro professor doing my kids therapy--- booya!  And lastly today we had OT with another very good, experienced therapist.

I was so relieved when I met my therapists.  As a therapist myself, I am a bit snobby about who treats Dominic.  I don't want to know more than the person treating my baby but I was just sure I would get some new grad... so I was thinking of how I woud let her go... "it's not you, it's me.. really.."  Sorry, you're not getting your feet wet with my kid!  So you can imagine how relieved I was when I saw my PT and OT.  I know they know way more than I do about therapy.. just how I like it :).  My speech therapist is younger, but she has been doing infantf feeding for about 10 years and is certified in infant vital stim... good enough for me!

So, here are a few shots of sweet man during his therapies... which he slept through today :/ and a couple of yesterday's procedure.

Tummy Time!

His face is blurry because the OT was
bouncing him, trying to wake him up

Swaying back and forth with the PT

Getting Ready for his procedures

After his procedure.. still a little loopy!

And a bonus picture of Mary Grace holding Dominic and her baby doll