Wednesday, March 10, 2010

The Latest and Greatest

C had another upper GI scan last Monday, March 1 (her first scan was after she was born and she was a couple days old). After this scan was done we waited to hear from the GI doctor if there were any issues and what suggestions/plan he would share with us regarding getting C to eat better.

Yea...that was a good idea in theory.

Here is the latest rundown in short form:

1. Kevin did finally speak with the GI doctor after speaking with the nurse many times. The GI doctor told us there is nothing wrong, GI wise, with C. He told Kevin that the ph probe showed no acid reflux, the gi scope showed no acid damage, the gi scope also showed no anatomical problem. The biopsies came back normal. The upper GI scan showed no issues. Ok, that is great but can you think of any other reason (besides her heart) why she is not eating well and vomiting A LOT? His response...wait for it...colic. Ummmmm, is that what you are going to go with? Colic? Are you kidding me? Yep. That is what he said. He also said that he does not think she needs to have lower GI testing and that she does not need a feeding tube. This should all be good news and in a way it is...except we still do not have an answer (which we are slowly coming to accept that we may never have an answer) but we also do not have any suggestions or a plan of action. When confronted by Kevin on why he had not taken the time to speak with us personally he pretty much said he could refer us to another GI or we could see another doctor in his group.

2. We took C to her Cardiologist yesterday, moved her normal appointment up by almost two weeks so we could address all this with him. He again reiterated that he does not think her heart is the major issue with her eating. Great. He even did another echo just to check stuff out. Asked if we would like to have a second opinion on the GI stuff. We said YES!

3. Due to my great friend SJH we are moving forward with getting an appointment with a pedi GI doctor at Shands. We will see what this doctor says and go forward....hopefully with some suggestions and/or a plan of action.

4. Saw C's Pediatrician today. Although she is tiny he is not over the top concerned yet. She is still gaining and we are being assured that her heart function is great. He is really hesitant at this point to place a feeding tube if not 100% necessary.

5. Kevin scared the crap out of me yesterday during C's echo when some fluid was found. He thought her peri-cardial effusion had returned and that could explain some of the crappy eating. Ummm no. This is why I should not listen to him sometimes...Her cardio said there is a tiny bit of fluid between her heart, diaphragm and top of lung. He said it could be anything including a little cold. He is not worried. I could have very cheerfully strangled my husband for freaking me out.

6. I did call and speak with the nurse coordinator at Children's Hospital of Philadelphia. They have a specific program for kids with C's main defect...single ventricle. However, we will be staying put with C's care, here in Florida, for the time being.

7. Went to C's second visit with feeding therapy and she is saying her issues are not behavioral. Well that's just lovely.

So, all in all I am super happy that there does not seem to be anything else wrong with C's make-up (outside of all the screwiness we already know about). However, we are still searching for answers.

Today C weighed 12pounds, 13ounces. She will be 7 months old on March 19. For all you mama's out there go pull out your baby books and you can see just how tiny C is. Her pedi said today she is "petite" and her cardio told us yesterday that there is nothing wrong with small people. I am just glad she is a girl! :)

One last thing...this is typical Carolena. She is "finding" her voice right now and babbling and screeching quite a lot. When we were waiting to see her cardio Monday I noticed that she seemed to be the only child there (with the exception of one other 2 year old) who was not just sitting sedately in their parents lap. Oh no. C is moving all around, laughing, talking, trying to get people to look at her, screeching at them when they are not paying attention, smiling at them when they do look at her. I remarked to Kevin, seriously, we have a child with half a heart and we still do not have a sedate child in our little bunch. If you know our boys at all you now how crazy wide open they are! Guess she just feels she needs to keep up...;)

1 comment:

bluemoxie said...

Hi! my name is Clare and I've been reading your blog via Buster's House and I feel your frustration in this new twist to Carolena's story! I tried to go back and see if you are feeding her formula? but I couldn't find where you talk about what she is getting. At the risk of sounding very forward, would you be interested in trying donated breastmilk? you can read all about me and my heart baby Julianne on my blog and feel free to contact me by email: lookupseeblue at hotmail dot com

I hope I am not out of line, it's just something that occurred to me as I was reading your story!
-Clare