Pudgie :)

Addy saw her nutritionist yesterday and our girl is now officially a CHUNK!!! She weighed 36 pounds!!! She's gained 9 pounds since Christmas, six of those since the beginning of March!!! Sooo she's actually gained weight too quickly so we are backing her feeds up a little bit and checking her again in two weeks. Addy is cleared to go back to school on Monday (woo hoo!) and she will be much more mobile again :) Not that we want her to lose any of the weight she's gained, just not move forward this fast :)

We are also still looking into what is causing the infection in her gut. We do know that it is not C-Diff, still not sure what it is.

I also had to take Little Man back to the ped for the ten millionth time I think and sure enough he continues to have double ear infecions and was referred to the ENT for tubes.

Immunology

We were finally able to get Addy into the Immunologist today. She was supposed to go last Friday but since she'd been sick for a week with the tummy stuff we had to postpone. As you can see, she is feeling pretty darn good right now! Her pediatrician ordered yesterday for her Home-bound services to continue until April 22nd because she is still seeing a ton of illnesses in the clinic. Little Man got over the tummy bug in two days it took Addy eight :( I know he brought it home from day care but we are seeing tummy stuff at school too :(

We met with the Dr. and I think I'm going to like her but she feels that if all of the things that she's going to test come up negative that we need to push more with GI. I think we need to push more with GI anyway but we (and our pediatrician) aren't  getting anyhere. We may have to go to Kansas City at this point. I did NOT like the GI from KC that was  Addy's first GI at all so I just don't know.

The doctor today decided not to put Addy through environmental allergy testing that just doesn't seem to be an issue. (I agree with this). She feels that it is probably a malabsorption problem or an autoimmune disorder. I think she's ordered just about everything to check these things out. She did notice that her liver something (I can't remember what it was) was high while she was inpatient in January.

She ordered a lot of blood tests. She is also going to have a sweat test to rule out Cystic Fibrosis next week. I'm not sure why we are doing this because she was tested for this as an infant before we adopted her, but we will do what we need to to help our precious girl!

We went to the lab to have blood drawn. After an hour and six pokes with no blood we were sent to the hospital to see if they could get it. My amazing little girl barely whimpered and laid as still as can be as the techs kept jabbing (nicely jabbing, they were VERY gentle) her little arms trying so hard to get her blood. I gave her a bolus feed before we headed to the hospital to give a bit more hydration to see if that would help. When we were taken back the lab tech said "Oh Addysen, I remember your stubborn little veins!" Uhmm sorry??? I didn't recognize her but we've seen a TON of techs in our lives! They warmed Addy's little arms up and first poke got some blood! However, it was just one vial and they vein turned on her :( So they had to switch arms and try a few more times before the other 10 vials were drawn. Yes, Addy had 11 vials of blood drawn! My amazing little trooper! If she liked candy she could have all of it she wanted after the morning she had! I'm sure she's going to be more bruised tomorrow, I think she looks pretty amazing tonight!

 The tests that were ordered were: CBC+diff, Vit D, CH50, IgG, IgM, IgA, tetanus ab, H. flu ab, S. pneumo ab (23 stereotypes), mannose bidning lectin, T and B cell quantification by flow cytometry, lymphocyte proliferation to mitogens (pokeweed, phytohemagglutinin), and antigens (candida, tetanus), neutrophil oxidative burst test and the sweat chloride test.  She is also running another stool work up to look at fecal fat, and  fecal WBCs. We probably won't have the results of everything for three weeks so that's frustrating but we've waited this long what's a few more weeks?? Not that I want something to be wrong, but I sooo hope we can find something to help her stay healthy!

Swallow Study

Well, Addy ROCKED her swallow study yesterday. However..... it was full of some valuable feeding info for us. It showed that she is not aspirating of any consistency, yeah! Buuuuttt it did show that she is extremely guarded when she swallows. She takes a long time to initiate the swallow and she is holding quite a bit under her tongue before moving it back to swallow. So we are going to continue working on increasing the bolus size and hopefully the sensory issues will continue to decrease. She's not going to love this by any means but it's necessary if we ever want her to eat orally. I'm at the point that I'm thinking that she may never eat by mouth. That's ok, I just hate it for her, I definitely enjoy eating!

She does love to help Little Man eat though, lol!

Starving

You know nothing hits you harder than finding out that you have been starving your child for the SECOND time in their life!!!

When Addy was almost three we switched doctors and found out that she had been on a supplemental formula for almost two years and was basically starving. So we went through a bunch of different formulas with a nutrition to find our liquid gold Elecare. It is seriously the only thing that Addy tolerates without throwing up. Anyway, Addy has been on the exact same amount of formula since she was three. Mind you, she is SIX. Whenever we have seen the DS Clinic, our pediatrician, GI etc. no one was too concerned about her feeding since "she's growing". Addy has only gained 8 pounds since she was 3. Granted, she gets sick a lot and always loses weight when she's sick but still.

(I had to really doctor this photo, Addy has rubbed her little face raw!)

Since these past hospital stays in January and the prospect of malabsorption was brought up our ped has referred us to many places since the GIs in St. Louis don't seem to think it's an issue even though she has ALL of the symptoms.

Our first appointment was Friday afternoon with the nutritionist. Her former nutritionist works at the hospital  now and actually came and saw her while she was inpatient. Anyway, we spent quite a bit of time at this appointment. She spent a lot of time figuring out exactly how much Addy should be taking in. Well, she has been taking in 840 calories per day. Yes you read that right, 840!!! For a six year old she should be taking in 1200-1500!!!! So our first plan of attack is to increase her daily feeds until she is at least taking in the minimum amount of calories. We are adding 40mL of formula to each feeding for a week then increasing another 40mL until we get to 360mL per feeding. I can't believe that this wasn't picked up on before :( We never had a follow up with the past dietician so that's probably why. We are going to be seeing this dietician monthly until Addy is at least at the 5% on the growth chart.

Addy is going to have a modified barium swallow study (with our amazing feeding therapist) on Tuesday and then she will see an Immunologist on the 22nd. She will be having full allergy testing performed as well as blood work to look into malabsorption and immunodeficiencies. I'm hoping that we will find out what keeps her from getting so sick and keep her healthy and have her become a strong, healthy, little growing girl!!

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.