January 23, 2003
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Good evening. I've been home about an hour and a half. Today has been an extremely long day. Raineebug woke me up at 6:00 am for the day. This after at least 4 nurses in the night hours, so it was a way to be exhausted from the get-go
First off at 8:45 we had the pulminologist appointment. The x-rays that my ped were concerned about they said were nothing to worry about (phew) We talked about med adjustments (we're doing some) Back to zantac instead of the prevacid cause she HATES the prevacid. Trying a different rescue drug that's known to work better for bronchomalacia babies. And then discussed the fact that she hasn't gained an ounce (actually lost 3) in the last 3 months. As a result they decided to schedule a eating evaluation and a swallow study. They pulled strings and enabled me to do them today rather then seperate trips.
The result; Swallowing she is NOT asphixiating on anything. Which is VERY good, if she was they would have wanted me to stop nursing, and mommybear would have gotten extremely grumpy.
The eating study, she hates textured things, only purreed things. So I'm gonna start backwards and do the pureed things, and see if I can get her to stop gagging on food. (All of my kids have gagged a bit for a couple weeks, but this is going on 3 months) Fortunately its not a mechanical thing like floppy esophogas etc, its just something we need to work through. She protects her wind pipe so much she won't let any food in.
So that was 3 floors of visits and like 3 hours of running around spread through out the day. The order of those was pulminologist, food eval, and then 3 hours later the swallow study. After the food eval and a quick lunch in the cafeteria we had the cardiologist appointment. My pulminologist had already said that the murmur was BAD and to expect a ultrasound. She was right. The cardiologist listened for a short time, and did a quick EKG. He was 98% sure what he was gonna diagnose. But ordered the ultrasound anyhoo. They once again squeezed us in, so we didn't have to come back. (Yeah!) Anyhoo we had the ultrasound and it was confirmed. She has (ready for the mouthfull?) Patent Ductus Arteriosus (PDA) Its is normally found in new borns, and he was astounded it hadn't been found yet. It WILL require being fixed. BUT GOOD NEWS! It does NOT require open heart surgery.
It will fixed with a catheter put into her groin and then a coil/spring thingy put in the hole. (I guess) Haven't talked to the surgeon's who do this, as they were busy, their gonna call (hopefully tomorrow) And will set up when it happens etc. So more details on this as time goes on.
So what is patent ductus arteriosius? Its an abnormal connection between the two major blood vessels leaving the heart. It affects the child by making them tire quickly develop slowly, catch pneumonia easily (sound familiar anybody) and breathe rapildy. If it is small, the child will appear well.
Apparently once its fixed everything becomes fairly normal except return visits to the doctor, and testing every so often.
I'm kinda numb at this stage. Tired, beyond belief, and not too sure how this is gonna affect us right now. And EXTREMELY greatful it doesn't mean Open Heart Surgery. I'll post more when I'm more awake
Comments (6)
Hi Tonia, I know what she has--I had it myself--it took them 5! years to find it. I had other health issues that they were more concerned with before so they never really got around to dealing with. I would freak my mom out by turning blue sometimes.
After trying to find a diagnosis forever, my mom finally tracked down some specialist that could almost diagnose me over the phone, but of course had to see me in person to make it "official" I had an open heart surgery at 5 and have been fine since. Glad to hear hers isn't too bad. I was too young to remember all the specifics as to what mine was like, just remember the stories. 
I do remember the hospital stay, etc. That was about 24 yrs. ago now? I did have a few EKG's growing up for check-up purposes and I think even now it shows up as a minor blip, but other than that it's fine.
Will getting that fixed help her breathing problems at all? I also have lung problems and I think mine did help some since the blood flow wasn't what it should've been before I had the surgery, but again I don't remember the specifics. And I still have the lung issues, which have in fact have already started making themselves evident the last couple of days. (see today's blog)
Anyway, from someone who spent most of my 1st year in and out of the hospital, and the few years after it sick alot, I did grow out of most of it and in the end I think I'm pretty normal and now rarely get sick (aside from that stomach bug that found it's way here last week...) Hopefully Raniee will be as well.
So glad you are back home and there is not to be any open heart surgery. Hugs young lady. Get some rest. PTL
I am glad they have found what is wrong! Praying for you all!
O/
I am so glad that your appointments went as well as they did. Keep us updated about the heart, and I will be praying big time. It does sound as though everything is fixable though.
I'm sorry and sad and pleased all at once...
I'm so glad they have FINALLY got specific about the cause, and there IS cure. Poor little Rainee bug - hopefully this is the turning point for good health.
Kudos to you for persevering and getting an answer.
Thiking and wishing and praying and sending love to you all, Tracie.
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