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Thursday, December 17, 2009

Pre-op appt

We met with the cleft team for Paige's pre-operation appt. First we met with Regina, the nurse practiner. She is and always is very impressed with Paige's eating ability. She weighed in at 17 pounds even today. (3 more pounds and we are off to buy new carseats! LOL) Regina gave us more meds for Paige's ear as they are pretty sure that she is going to need to have her tube replaced during surgery. It has not opened up at all since she has had them put in, just too full of junk. Regina discussed Paige's over all growth and things look wonderful. She is healthy!

We then met with a nurse from the ENT clinic. She discussed a study that the clinic is doing on estacian tubes. They will do a full evaluation of Paige's ears for research. It's pretty cool because they will be able to see everything that is going on with her ears. They also pay us for doing it but we thought it would be beneficial for Paige since she is having hearing loss right now. I am going to start American Sign Language (ASL) with Paige so she can have that as suplemental language. It is often times fitting that I have a child with hearing loss. I took classes in college to learn sign language, my dad is deaf, I have friends who have profound hearing loss, and I can be often times (when I'm not out of practice) fluent in ASL. So it "should" come natural to me. To Hal, not so much. LOL

We then met with Dr. V. She did Paige's NAM adjustment and looked at her gumline. While Paige has made remarkable progress. Dr. V does not think that Paige's gumline will be ready for surgery!!! I'm extremely annoyed by this for many reasons. It's almost like they just give up on the NAM! Why do we do it for MONTHS if they are not going to see it through. Plus, I have recently talked with a mom of a baby girl who had an 18mm cleft and it was closed. Paige's was NO where near that. Dr. V and others have been quoted as saying "well most of the babies need a bone graph anyways!" Well, I don't care what other babies have to do, I don't want Paige to have one! (Take that back...Erica I don't want Lily to have one either! LOL) So we discussed postponing her surgery. While I hate to have that done, if it saves Paige from having a bone graph, I would move mountains! We are going to have that conversation again on December 30th at her last NAM adjustment. If her gums have moved since then, we are going to push for a postponement of surgery. IF they have not moved by then, then I doubt they will and we will go ahead with surgery. I'm torn either way! I want her to have her surgery but I also want to save her the PAIN of having a bone graph. People think "oh it's only a bone graph!" But think about it, would you want your 8 year old daughter have bone taken from her hip to put in her gums? I don't! PRAY, PRAY, PRAY!

We then met with Dr. Grundwalt, her plastic surgeon. She once again walked us through surgery and how they perform it. It's through a magnifying glasses and takes about 4-5 hours. It's very time consuming but NOT a major surgery with a lot of blood (as with most plastic surgery things). She will still be under the entire time. After surgery, she will be moved to the recovery ward and then to a recovery room on the 6th floor. She can have visitors later that night (I asked specifically for you Erica!) LOL The only thing we ask of anyone, is if you are planning to visit, please just call ahead of time. We are not sure how she will handle the surgery. She will have tylenol around the clock for a few days and morfin if she needs it. Dr. Grundwalt says that she is going to wait on Dr. V's decision of the gumline but does not see it capable at this point as her gums are still not touching.

We met with Matt briefly today and he gave us some new bottles to try. The pigeon bottles are pretty cool. The best part, SHE CAN USE A REGULAR CUTE BOTTLE! She has to use her tongue to make the formula come out with the special nipple. Pretty cool. I tried it and she was too hungry to care. So we will try again later.

After surgery, NO spoons, fingers, pacifers (can't use one anyways), or anything besides a bottle in the mouth for 2 weeks. She will have the NO NO bands (restraints on her arms) for 2 weeks also! That will suck but it is called "tough love!"

So all in all, we still do not know if surgery is going to happen. My feelings are that it probably will. I get the impression that they are done with the NAM with Paige because everything on the outside looks so amazing! I just think about her future and would like to spare her the agony of having a bone graph. At least she has a good friend who will go through it along with her. I say we schedule them on the same day! :)

2 comments:

Miss Erica said...

oh man! I get so frustrated with hearing the success others have had with the NAM vs. what Liliana has had. I'll pray extra hard for Paige!! We are going to plan on coming down on Friday, after her surgery, but I'll call you to see how she is doing.

I didn't know that they could not have food for 2 weeks after surgery. Or fingers for that matter. It's going to be rough. Thanks for the update, I'm so glad to have met you! You are such a supportive lady!

Melissa said...

Your daughter is so precious. My son is going in for his surgery Tuesday and I was amazed by all her pics. We had our pre op this last week. I read on here you have tubes in her ears already? They didnt want to do that and I was wondering why, they told me it causes milk to come out ears, does she have that problem? You can see my sons site at http://www.totsites.com/tot/jacobyoukhanna