School???

Poor Addy! Every morning she asks if she can go to school! She is missing it something fierce! On Monday her ped cleared her to go back to feeding and music therapy but says no school until at least April! She wants us to keep her away from big crowds if we can to protect her from getting another respiratory infection/virus etc.  She has also been conferring with GI in St. Louis and things aren't really going anywhere!!! She and our pulmonologist are really thinking that we need to look more into this possible malabsorption issue but so far GI is thinking that's not the problem. Soooo frustrating!!! Addy is scheduled with an Immunologist on March 22nd and is seeing a nutritionist on March 8th. She is also going to have complete allergy testing. Our ped is still working with St. Louis on what we can do to rule in/out malabsorption.

So right now she is home and bored :( I try to set out several activities for her to do during the day with her nurse but it's not really happening. By the time we get home and settled for the evening she's pretty tired. It's looking that we will possibly have a snow day tomorrow so I may just have to  push her some so she doesn't lose all of her skills!! She's reading really well and doesn't appear to be regressing academically but she definitely is physically :( she's being very ummm lazy!!!

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!

All of the Heflins are HOME!

I know several local people around here are not fond of the only pediatric pulmonologist. However, I must say that I have NEVER had a bad experience with him. He was fantastic with Addy from day 1. Last Monday while at our ped she asked again when we had our appointment to see him. February 18th for both Addy and Little Man. Addy due to having the multi-focal pneumonia in October and it never really clearing up and Little Man having repeat pneumonia and wheezing issues. Well, our pulmo was out of the country until Saturday so our ped said there probably wasn't a lot going to happen while inpatient, just treat until he could be contacted.

Well guess who showed up before 9am this morning? Yes our pulmo who had been contacted about my kids while he was out of the country. He came in the day after a vacation, on a Sunday no less. He talked with Scott about what's going on with Addy. I have to say that I was impressed.

Addy's right lung appears to have a blockage and is herniated across the midline. It is blocking air intake on that right side. He feels since Addy really doesn't eat that it is most likely a mucous plug. This usually occurs from the other lung being collapsed but doesn't feel that was the case with her. It can occur when it hyperinflates due to a blockage. We've been told more than once that she has had hyperinflated lungs.

So... the plan of attack is CPT twice per day for 10-15 minutes to see if we can break it up. We will go and see him on the 11th instead of the 18th. If it hasn't broken up he will have to get in there and break up the plug. Not really sure what that will entail yet, I'll know more on the 11th. Since she's had CPT every four hours around the clock for a week I have a feeling that it's not going to break. A vest was discussed but didn't happen.

So we are now HOME with our handy dandy O2 concentrator and big extra tank in case the power goes out lol.

Addy will be home with a nurse until further notice at this point. We will see our ped this Friday with both kiddos to have them checked to see how they are doing. We will probably still pursue seeing an Immunologist since Addy has had multiple infections lately.

I want to thank so many of my friends that have checked on us, prayed for my kids and brought us meals. It is all very appreciated! It was a very long week and we are all very happy to be back home together. Now if we can just get the kids back to their schedule. Little Man has been a fussy mess since getting home. Poor little guy.

One is HOME :)

Little Man got his walking papers this morning :) He stayed off of O2 all day yesterday and through the night :) Sooo happy that he is home all bathed and de-tendergriped (lol) and bracelet is off! I told them it was too tight!

Poor baby :( He is pretty cranky now that we're home, he was good as gold all day, go figure! He's happily swinging right now and will be off to bed soon. I have his bedding in the wash right now since it's been up at the hospital. He sleeps in a Rock And Play,  he can't stand his crib so it went with us so he could sleep :) I've already bleached wiped the base and lysoled the liner, didn't want to share whatever gunk was on it from being inpatient!

Addy is still in the hospital. She has to go through the night without her oxygen mask to be discharged. Not sure why since we are more than capable to put it on her here at home. Not like we haven't done it a million times before!!! Sometimes I wish we just had a tank here at all times just in case! So we are praying and praying that she holds her own tonight and can come home tomorrow. She will be a much happier girl without the IV antibiotics and has her arm back. Her pseudomomas medicine must burn because she cries every time it's hooked up :( If she stays I will go up on Sunday and Scott will stay tomorrow. He needs to work on Sunday at this point. We need to figure out what to do with Little Man then, I don't want to take him back up there and expose him to everything all over again. RSV is running rampant around here!

The hospital doc was going to talk to our ped about referring Addy to an Immunologist to see why she keeps getting so sick. Really hoping and praying it gives us some answers for our amazing little girl!