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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, May 28, 2013

MayLee's big update

May had her MRI last Friday. I thought she was doing really well health wise until the nurse put the pulse oximeter on and she was Satting in the low 80's... Luckily after talking with the doctor and giving her Flovent and Albuterol, which I chucked in the diaper bag last minute her lungs opened up and they decided to proceed. With a caution that she may have to be admitted for observation if her sats stayed low. Once she started getting happy gas she jumped up to perfect. That pretty much confirmed some Reactive Airway disease. Which is something we monitor closely but hopefully she grows out of. It is basically asthma but you can't give a baby this small a diagnosis like asthma because more than likely they grow out of it. She did well during the procedure. Waking up was not fun. She felt very weird so she just cried and cried. Her IV leaked so we took it out and I just nursed her. She calmed only for a little snack and then cried some more. The doc gave her two big puffs of Albuterol after she woke up so her sats stayed happy and she no longer needed oxygen so we were able to be discharged. I put on her pj's and stuck her in the sling and she fell right to sleep. She was so good.. We all came home and had big naps... 

Today we met with the neurosurgeon. MayLee's tethered spine is very impressive. It is a marvel that she is doing as well as she is. She is tethered by a fatty filum that is pretty large. Her spine is also tethered so low that it is at the very end. We don't think that her hemangioma and tethered cord are related. That is one thing to look and be mindful of during surgery. He won't remove the hemangioma at all since it will eventually go away later in life. They will be creating scar tissue which may cause her spine to retether. But it is better to do this all now so that she doesn't loose feeling in her feet and also become incontinent. It was lucky we found this early before those things happened. It's all going to be a little longer term/life long than we thought. 

Scheduling just called and we set her surgery up for July 17th.... 

Okay this is on!!! 

2 comments:

Cynthia said...

Thanks for the update. Your kids never do anything halfway! I am glad the problem has been caught early. Is Reactive Airway Disease the same yhing as Cough-Variant Asthma? My twins both have CVA but Logan has grown out of it.

berrymom said...

Oh my. We will keep the prayers coming. Thank you for the update. We love you!