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Hello! My name is Kris. I am the Mom of 2. Jordan is 5 and Hayleigh is 23 months.I am absolutely amazed that I finally found a group for rare neurovascular disorders! My daughter Hayleigh was diagnosed with AVM last month after a 2 week stay in the children's hospital for Pneumonia and RSV (She also has asthma) They could not figure out why Her 02 levels were so low (staying around 73 but sometimes down to 68) They had Her on tons of different antibiotics and asthma meds to see if they would help. She was on a continuous nebulizer with up to 11 liters of 100% oxygen and Her levels remained low. They did every test they could think of and took more blood form Her little hands and arms than I thought was possible. They finally did a CAT scan on Her lungs and found the problem, but wanted to make sure so they did another CAT scan and injected dye into Her lungs. They found the AMV and did a Cardiac Catheterization that day. She had 14 metal coils inserted into the malformation. This Children's Hospital is well equipped for rare conditions and has seen just about everything, but they said they have not seen this in 10 years. They used Her case in a study at the hospital and a presentation at a Cardiac conference. I'm just amazed out how rare it really is. So anyway, She is now on baby aspirin every day to thin Her blood and Also Singulair and Pulmicort via the nebulizer every night for her asthma. It's so hard having a "sick" child. She has to see Her pulmonary specialist every 3 months, Her Cardiac Surgeon every 6 months, and a genetics specialist (although I'm not sure why. I was getting way too much info at once and I can't remember what that was for. Anyone know?) Sorry to ramble on. I am just SO glad I have a place to go to talk to people who understand!
I'm pretty worried right now because She has Her first outpatient visit with the Cardiac Surgeon next Monday. He will be checking to see if more malformations have appeared and they will be checking every 6 months after that. The surgeon said He saw quite a few small ones that may get bigger and need to be fixed, but if He has to keep fixing them then it will result in a lung transplant. I'm very scared of the possibilities. I'm so paranoid these days. I'm constantly checking Her breathing, checking Her fingernails, toenails and lips to make sure they aren't blue like they were, and I have Her sleeping with me now (She'll be 2 on the 21st) Is anyone else going through this? I don't know how many of you on here have children with this condition (or any type of neurovascular condition) But it's hard to go through all this worrying.
Ok, I'll stop "talking" now, LOL! I'm sorry this was so long. Like I said I'm just so happy to know there are some out there who understand. Thanks for reading! :o)
Kris
Scott
Jordan (5)
Hayleigh (22 Months)
Scott
Jordan (5)
Hayleigh (22 Months)
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