First of all I have to say we have the BEST cardiologist ever! If your in Tucson and looking for a pediatric cardiologist you must see Dr. Klewer. God has put all the right doctors in our path over the past 13 months. So on to my post....We decided to leave a message for Dr. Klewer to tell him about Arianna's saturations, before we headed into the weekend. He returned my call within 1 hour and no once rushed me while on the phone, which most doctors tend to do. He said with Ariannas heart condition she should have saturations running between 95-100%. He asked is she had a cold of any kind, which I told him no. We saw him 5 weeks ago when she was first fighting that horrible virus/bronchitis she had. We had chest x-rays done then which ruled out pneumonia. He is now thinking she might of had pneumonia but since the x rays were done so early on that it probably wasn't detectable then. He feels Arianna has a partial collapsed lung which is causing her low oxygen saturations. I have never had pneumonia but apparently the affects can linger for a few weeks. He wants us to keep monitoring her O2 sats and if she gets worse over the weekend then take her to the ER. If she still hasn't improved by next week then take her to the pediatrician to get another chest x-ray done. He asked if we had a pulmonologist, which luckely we don't, but he said if the chest x-ray comes back normal then we might need to go see one. If her sats are staying this low then a CT scan might need to be done. Then he goes on to say 'don't worry', yeah OKAY! We have her hooked up to the pulse ox right now and she is sating steadily at 88-89% while sleeping. This is lower than yesterday so we will keep a close eye on her.
I did tell him the reason for getting the monitor was for poor eating and he is wondering if she is aspirating whil eating. There is such a thing as aspiration pneumonia so its quit possible. I'm now wondering if the swallow study would show if she aspirates while eating. Still haven't scheduled that test so I'll be calling them on Monday to follow up.
Dr. Klewer then went on to tell me he received my email I sent the other day about the support group. I am trying to get flyers out to his other clinic at the multi-specialty center. He said there is a nurse who was very active in supporting the previous groups and she would be happy to get the word out about Mended Little Hearts. He went on to tell me that he has received an email from Kimberly Russell who is a board memeber for the Adult Congenital Heart Association. She was born in 1960 with a single ventricle, pulmonary atresia, and chronic cyanosis. To find out more about her you can click on the link and go to her name. Dr. Klewer thinks once we get the support group going and having regular meetings that we might be able to get Kimberly to attend and speak at our meeting. I am so amazed at how Dr. Klewer is already getting speakers ready for our meetings. HOW EXCITING!
We'll as I sit here typing Arianna woke up and wanted to be held by Daddy while she sleeps. I am beginning to think this is a lung issue because her sats came up to 94% while being held in the upright position. I have a sense of relief that it most likely isn't a heart issue. I can handle dealing with that alot better. She is on lasix which she takes every other day and since today is the off day and her sats are worse, that just confirms things in my mind.
Oh one more thing, we met with Sherri today from early intervention and she was very pleased with Arianna's progress. She has found us a speech therapist so we should be hearing from her soon to set up our first meeting. We talked about the possibility of needing to continue PT because of Arianna's low muscle tone. She still likes to sit in the 'W' position which is a sign of kids with low muscle tone, then we noticed she has issues abducting (twisting her torso) to the right. She can do it easily on the left but has issues on the right. This goes hand in hand with her earlier issues of rotating her right arm inward. So with all this said we are going to get PT going again. Looks like our days will be filled with more therapy visits.
I better get going, have to run to the store to get my baby some milk. I'll update more this weekend.
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