Friday, November 12, 2010

Prayers are Working

Carolena is doing well. Very well as a matter of fact. Her eating is still atrocious and she is still vomiting a lot but her heart...her heart is doing well.

The past few weeks we saw the GI doctor and both of C's cardiologists.

As usual, the GI visit was useless and unhelpful. The doctor told us C's issues with eating are behavior related. Ummm, ok. So C waking up in the wee early hours of the morning from a sound sleep and puking everywhere is a learned behavior? Really? It has been a really long time since I went to medical school (you know, like never) but I really don't think my 15 month old daughter is saying, yep, now it is time to wake up and puke everywhere just so mom and dad have to wake up with me. Not seeing her retching and dry heaving as a conditioned learned behavior to attract attention either. Oh well, again, what could I possibly know since I do not have an MD after my name.

C is back in feeding therapy. Well, kind of right now. I am still waiting on the therapist to do her final report and then we will see which type of services C will be getting. I am going through the Early Steps program as my insurance does not pay for feeding therapy. Early Steps is an early intervention program for children birth to 3 years old who qualify based on medical necessity. C has been seeing an infant/toddler development specialist now for the last month and she is the one who called in for a more advanced speech/feeding therapist to help with C's eating. Of course, both ladies are still thinking the same as us, C does have some behavioral refusal not due to aversion but due to some medical issue with her guts. So, we will see how much further we go until we are all insane.

End of October C saw the electrical cardiologist for her 3 month check. She had a 24 holter monitor and then another ecg (ekg) at the office. The EP doc is very happy with where she is. He is seeing no arrhythmia activity on the holter and thinks the current medications she is on are doing a fabulous job controlling the arrhythmia. I would really have liked to hear him say that he does not think she needs the meds anymore but I can't always get what I want. I did get a small reprieve though in that the EP did allow us to cut back to giving C her one med 3 times (every 8 hours) per day versus the current 4 times (every 6 hours) per day regimen she was on. Having to get up at 12:30am to give her meds every night was really getting old. At least now we have one fewer sleep disruption...yay! The course for the EP is pretty much status quo until she is ready for her Fontan surgery between 2 and 3. He did say that once she gets to the time to do the pre-Fontan heart cath he would consider taking her off her meds. He wants to get the most accurate info during this EP study during the cath. Since this will not be happening for at least a year, I will not worry about that right now.

Even with the good news from the EP doc I was still really worried about C's appointment with her regular cardio yesterday. With the slight schedule change in C's meds and her being sick on top of everything I was just totally freaked out (and exhausted). C got some tummy bug that had her vomiting (even worse than usual) and diarrhea so bad for almost an entire week. I at first was not sure if she was sick but then I got it too. And my mom. And my boss. I guess C is just a little giver, what a sweet child she is. Anyway. Fortunately she did not run a fever (can trigger her arrhythmia) and with her g tube we were able to keep her hydrated. Otherwise she would have been in the hospital. Poor baby felt so bad. She would just stop in the middle of what she was doing and lay down. So not like her and also indicative of heart failure (taken in conjunction with lack of eating, increased vomiting and general lethargy). Nothing is ever easy or straight forward with C. With her feeling so poor and me being sick two weeks in a row and my car still having issues and Kevin being out of town for the better part of two world was really not right.

But, as with all things, prayers are bringing us through. As I already mentioned, C saw her regular cardio yesterday (does all the structural/defect stuff). She got a great report from him. Holy cow! According to her cardio she is doing awesome. Her echo looked great, her function is good, her flow is good, her confluence (the pulmonary vein stuff) looks good. He was amazed at how big she has gotten and just giddy with how right on developmentally she is. So far she continues to be on the top end of the spectrum for babies like her and we are beyond blessed and grateful. We do not need to go back (unless C has issues) for another 3 months. Hurray! He cleared us to travel and said "we absolutely have to go" and see all my family in Alabama. Of course we will be on super, heavy duty hands off, no sickies, no holding mode but at least everyone will get to see her. For that I am truly happy. Her cardio also delivered some other good news for me personally...he said he likes to have the Fontan done around 2 1/2 to 3 years of age (on the older end of the spectrum). Even though C will be more aware I am really ok with her being a littler older and for purely selfish reasons I want her around for all the holidays next year as well. If they did her Fontan right at 2 (August) she would more than likely miss all that stuff. I will not go into too many details but the Fontan will be extremely hard on C. There will be a lot her body has to do to adapt to, especially the artificial circulation, and there are a lot of kids who just don't make it. But, right now, C is doing remarkably well and we are going to spend the next year just being and doing.


angie said...

All of that is just great news.

As for the tummy virus, that ran thru our family during Easter but luckily I didn't get it. Emma had it the worst for 2+ weeks. She went to the pedi 3 times & the ER twice. Her having reflux made it very diffcult for her to shake it.

HeartBabyHome said...

I came across your blog today and found that our daughters have similar issues. I expect my daughter to have the Fontan next summer. She also has a g-tube and multiple tiny spleens (which they have her on a probiotic medicine for) and the malrotation and heterotaxy....
we're also working on eating issues.

On my website, I draw heart images for parents of CHD babies--to help them explain the specific defect to their friends/family or just to get a pictorial idea of what's going on.

I'd be happy to draw Carolena's heart for you, if you'd like one.

I hope you enjoy your pre-fontan time - we've been calling ours "the honeymoon period"

and I'll keep an eye on your blog ;)