January 23, 2013

Hailey's Heart

What a day, where to start...
    Today the girls both had a pediatrician appointment. My hopes were to figure out why Hannah was vomiting blood or at least have a plan to figure out why, and to get the results back from Hailey's heart ultra sound.. The appointment did not go how I expected.. The pediatrician does not want to do a scoop of her GI to check if there is a bleed unless she starts puking blood again. Which bothers me because how many times do you have to bring your child to emerg puking blood before they will look into it?
   Then when we start discussing Hailey, she confirmed that Hailey does need surgery to close her PDA. The heart ultra sound showed blood flow threw the PDA to the lungs, which might be what's causing her to sound congested. Then came the real shocking news... it wasn't just the PDA that was making her heart murmur sound so long... She also had narrowing of the pulmonary valve... Hailey my "healthy" daughter... Completely shocked. The pediatrician told me what she knew and said we would need to be seen by a cardiologist again and on a regular basis. The ultra sound showed that the walls were thickening which was causing the valve to narrow..She said that Hailey probably wouldn't need surgery until she was an adult. They are also concerned that Hailey isn't growing because of her heart. She's on the 3rd percential for heigh, however DB and I are both not very tall so maybe she's just going to be a shorty.
 After going home and googling Pulmonary Valve Stenosis I learned that Hailey was born with this defect. The congenital pulmonary stenosis occurs in the first 8 weeks of fetal development due to improper development.. and is BY CHANCE, not a genetic thing. It is also the second most common defect of the heart. If/when Hailey needs surgery to fix the narrowing they will insert a balloon catheter into the valve to keep it open.
  My one sick hearted child just turned into two.

  Next on the stressfull things, Hannah's trach fell out. So I had to do my first ever emergency trach change alone. I have to admit yes my heart stopped but it wasn't that bad.. The emergency bag with the spare trach could have been better organized but aside from that it went really well.. I noticed her little cry.. her REALLY cry not her trach voice cry that's what made me look over. The trach must have poped out when she was crawling around. She ripped off the ventilator before I could see that the trach was out and then she reached for her trach and looked like she was going to rip it out so I yelled " HANNAH NOO!" as I realised that I could see the part of the trach that should be inside her throat. She didn't turn blue she cried pretty much the hole time, she sat her self up when I was dumping the emergency bag to get the trach and then fought me while I tried to put it back in. I would say the 4 minute rule for how long you have to put the trach in doesn't apply to Hannah. She could clearly breath and didn't look distressed.. sure she wasn't breathing as well as she could have and she was very freaked out but who wouldn't be.

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