Lung update

I took Addy and Little Man back to the pediatrician today for a post hospital visit. Fortunately Little Man had a clean bill of health today :) VERY thankful for that! He still will see the pulmonologist on the 18th of this month to make sure we are on top of his wheezing issues.

As for this little beauty:

Her lungs still sounded gunky and she continues to have the nasty cough. She is down to 1L of O2 during the night. Unfortunately she WILL NOT keep it on and we have to big meanies and put her back into her No Nos :( She has had a very hard time with this as well, but it is necessary. Her O2 level drops into the low 80s at times during sleep so there's not an option here.

These do not hurt her, just keep her from bending her elbows so she can get her O2 off. My ped said today she's had patients before that have to wear them in their car so they can't get out of their carseat lol. I've never had an escape artist so hopefully we won't have to do that ever!

The update today has a few components. When the pulmonologist read her x-ray he mentioned that Addy's bones are very thin. He said that she may possibly have a problem with absorption.
MALABSORPTION:

Symptoms

• Bloating, cramping, and gas
• Bulky stools
• Chronic diarrhea (may not occur with vitamin malabsorption)
• Failure to thrive
• Fatty stools (steatorrhea)
• Muscle wasting
• Weight loss

Malabsorption can affect growth and development, or it can lead to specific illnesses.

 She's been to GI specialists for the bloating, gas and chronic diarrhea for years and no one has ever mentioned this or even looked into it. Addy weighs 28 pounds and has probably been the same size for two years. She grows VERY SLOWLY. So, our ped is contacting St. Louis to make sure the bloodwork she orders will look for everything. The blood draw from the 28th didn't look too bad but did not look at specific vitamin levels. With Addy's history of bowel surgeries it is very likely that she is not absorbing her nutrients the way she should. When we looked into malabsorption, it fits Addy perfectly so we may have some answers regarding her chronic GI issues. Guess I should have gone to the pulmonologist about her belly!

Addy has obviously been home for the past two weeks. Her ped today decided that she needs to be put on Homebound until her lung problems are resolved. Her right lung is herniated through the midline and has a significant mass of a mucous plug which has caused this chronic pneumonia. She has decreased air movement in her right lung due to this condition. We have been doing her neb treatments and some aggressive CPT for the past week we've been home. We will find out Monday if it has helped break the plug up at all. If it has not, most likely Addy will have a bronchoscopy to see exactly what's going on. She will have to have this plug removed in order to get better if the current treatment we are doing isn't working. She is just too sick to be at school and we don't want her getting any other infections so she will have to stay home at this time. We will be avoiding crowds with her and she will have a nurse full time during the week while I'm at work. I hate that it has to be this way but we've got to get her better. Poor girl misses her friends so much. Every morning she asks to see Mrs. O (her K teacher) and Jackson. Jackson was her best buddy and unfortunately he has moved since Addy has been home. She is going to be crushed when she realizes he's not there. Her class sent home a bag full of get well cards. They were all so sweet, her peers really do love her. One little boy even brought an adorable stuffed dog with a blanket for her. He's been really worried about her. Her teacher and I are going to find a time that we can have Addy Face Time her class so they can see that she is ok and she can see them. We were going to try to do that today but we spent quite awhile in Springfield at the doctor today and I honestly forgot.

So I'm going to be getting some things together that I can have the nurses do with Addy at home for awhile. She will have a teacher assigned to come out and implement her IEP goals at home but she's going to need to keep that little brain busy!