DAY OF LIFE 74

Today is Wednesday and my mommy learned really fast "how" things are done at this bigger hospital. 

Today at the "daily rounds" they had a lot to talk about since I was "new" here...

I weighed: 2880 grams (6 pounds 3 ounces.)

I am still on much higher oxygen than I was.

I had to have Tylenol x 3 doses yesterday and through the night because I was so fussy.

They gave me Ativan sedation for my fussiness and my mommy didn't like it, but knew I needed rest, "somehow."

They had already "checked" me several times since I have been here because of my low glucose and they wanted "another" blood test (for my glucose levels) and I was still looking pretty pale so they would check my hematocrit numbers as well. (http://www.nlm.nih.gov/medlineplus/ency/article/003646.htm).  At the other hospital, they were only checking my glucose 1x per week, but I was the "new" kid on the block, so they were being cautious.

They wanted to schedule an eye exam to check for Retinopathy on my eyes since they had to increase my oxygen... (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002585/)

They wanted to give me a shot called Synagis for RSV since I've had so many Respiratory Problems.
(http://pediatrics.about.com/od/rsv/a/1006_synagis.htm)

Today my mommy got a visit from an Ear, Nose & Throat Doctor (ENT.)  They "assessed" me and wanted to get mommy's permission to do a "Rigid Brochoscopy" during surgery so they could "see" what is going on.  If there is some "extra" floppy skin causing the noise I make when I breathe, then they asked to "clip" it out..She of course...agreed....anything to make me breathe BETTER!!
 (http://www.google.com/imgres?imgurl=https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpainAAZVxtHe3q7xgIfSAbgH87eoC5OPhkbE8sP0TxFiLqTF9qnNArMenUDaQrNevbYqM10vP9u1dVN8s1olILgkMmSuSmjWvkEddHHKnZshrdSpR3CKzduVGmgF7QhkGTd-Ofv1xtSg/s1600/bronchoscopy.jpg&imgrefurl=http://movies-felixdanielmarshall.blogspot.com/2011/03/bronchoscopy.html&usg=__CYmoLM2L143DD6tMStNT3jEDHBc=&h=434&w=700&sz=30&hl=en&start=8&sig2=v5N4gqVuZEGg2l31Lls7HA&zoom=1&tbnid=cbGx7RzbjWlQ7M:&tbnh=94&tbnw=152&ei=iOKKTb6gNZK6sQP3sc2jCg&prev=/search%3Fq%3Drigid%2Bbronchoscopy%26hl%3Den%26sa%3DX%26rlz%3D1T4ACAW_enUS377US381%26biw%3D777%26bih%3D291%26tbm%3Disch&itbs=1&iact=rc&dur=344&oei=3eGKTamHE5O4sAP299mcCg&page=2&ndsp=9&ved=1t:429,r:0,s:8&tx=129&ty=79)

Endocrinology came in today to discuss some things with my mom and the main Doctor Neonatologist did as well.  I am not sure "where" the mis-communication is, but my Doctor wasn't aware that the Surgeon had already talked to my mommy yesterday & he "left the decision up to my mommy & daddy" as to whether or not to do the surgery.
The main Neonatologist Doctor made it sound as though we would continue to do testing, to get the "proof" we need.  I guess sometimes people "don't" communicate their conversations with each other, so the Doctor said he needed to get in touch with the surgeon to "get on the same page."

Well...I was having one of my "best" WORST "reflux" days..I was a refluxing machine and it was good for them to "see" what my life is like for me.  They could obviously SEE that I was suffering..I am glad my mommy and daddy asked for me to be transferred.  This will make the process easier and faster.

The geneticist came in today and he didn't have a whole lot "more" to tell us than what the original geneticist had found, but he did add some "humor" to the situation...he was funny...my mommy liked him.

He "explained" my situation like...BAKING A BATCH OF COOKIES.  Let's say...my mommy decided to bake a batch of cookies and she "forgets" the salt (DELETION on chromosome #9) but when she "adds" the baking soda, she adds "double" the amount (DUPLICATION on chromosome #14.)  She will still have cookie dough to bake, but they may taste a little "different."

Not necessarily "good," OR "bad,".....just "different."  This is how he related to my situation.

Funny guy because afterwards he pointed to his "bald" head and said..."we all have chromosome issues..some are worse than others...I got the bald one."  :)  My mommy liked him and his analogy.  Left her with a smile...