Friday, July 20, 2012

Hospitalized, again

Landon and I are sitting in the hospital for the second time in 4 months, we have been here going on 4 days now. He has been such a tough little trooper through all of this, and I hate having to snuggle with him while he is continually being poked to check blood sugars, poked at 3:00 a.m. for blood draws, you know the normal hospital routine. The poor guy anytime someone walks in that is wearing scrubs, he starts crying and saying, "no, don't poke me please" It just breaks my heart. This is the shortest duration for him between hospital visits. He was hospitalized in March for 3 days for a cold type virus with a high fever, but before that he had not been hospitalized since he was 10 months old. I quite like the longer periods between visits, and this is precisely why daycare and school with all their germs scare me with this one.

Back tracking to Tuesday when we got here, apparently E was sick this past weekend but since I didn't have them I was unaware of it and was just told "she's sick" when I picked them up. E had a slight fever and some gastric issues, but she's also been cutting those bottom canine's so really at that point it could have been either or. Well Tuesday morning at 5:00 a.m. Landon wakes up dry heaving, my first thought was, "oh crap please do NOT be getting a stomach bug." Well low and behold at 5:30 he puked a few times and then again at 7:00 a.m. So knowing as all Mito and FOD moms know, I started packing a bag just in case. I called the Pediatrician and she told us to head to the ER, just to keep an eye on him and have him in the right setting if further intervention was needed. He refused to eat or drink anything, and slept 80% of the day. They decided to admit him and put him on D-10 since he was puking unless on Zofran and running a fever. He needed to rest to fight the virus, but couldn't rest and take in enough fluids and food to keep his blood sugar out of the danger zone which for Landon = a hospital stay.

He continued to do o.k. on zofran, but still sleeping a lot, spiking high fevers here and there and puking as soon as the zofran wore off. He finally was able to keep food down early Thursday, but his potassium levels were really low, so we had to start on iv fluids with D-10 and Potassium and were told we would be staying another night.

Fast forward to today, his 3:00 a.m. labs looked great, his potassium was back to normal and his metabolic levels were all where they want them to be! They turned down his maintenance IV this morning in hopes this would trigger him to eat and drink more on his own. He's had more this morning than he has over the past few days, but nothing compared to his regular appetite...which again can be partially attributed to the constant fluids. If he can keep his blood sugar up on the reduced fluids, they will lower them again sometime this afternoon. If he can keep blood sugars stabilized then and eat and drink enough then we will be discharged this evening. I am really hoping he can be discharged tonight, we are both tired and worn out from being here and miss our E bug so very much.

Mito sucks, and I hate that I can't take this from him and deal with it myself. He is so brave and such a trooper though. He has all of the nurses and techs, residents and med students wrapped around his fingers. They play with him when they come in and have brought him blankets and toys to take home...he's a ham even when he's sick, and loved by so many.

I want to say thank you to all of our neighbors and friends who have been so kind. So many of them have brought food up here so I wouldn't have to eat out of the cafeteria for every meal, offered and promised meals for when we go back to the house so we don't have to worry about food for a few days, they've asked if we needed anything brought up here, and have just come to visit so we could see some familiar and friendly faces. It's really hard having ZERO family here and Landon being hospitalized, so thank you from the bottom of our hearts for being so amazing.

Landon in the ER on Tuesday morning, poor guy.

He was feeling a little better on Wednesday with the Zofran and some IB Profen to help with the fever and headache, so he was able to sit up in his bed and play blocks for a bit. E even came to visit and kept knocking his tower down. 

Miss Emeline came to visit, and thought it would be fun to try and hitch a ride on Landon's IV pole. She really liked coming to visit and trying to find all sorts of goodies in Landon's room that he wasn't interested in eating or drinking. 

My little snuggle bug, he kept saying 'snuggle with me mommy.' It was nice to get the alone time with him, he's usually too busy to snuggle these days.

He loved having E come visit, she would immediately want to sit in his bed and steal his food and/or drink. They are best buddies and I just love that they are so close, which does make for some typical siblings spats here and there.

Monday, July 16, 2012

FOD Spotlight in USA Today!

This past weekend, FOD's were given a spotlight sectioning the USA Today's charity banner! FOD's, or Fatty Acid Oxidation Disorder, are under the Mito umbrella and is specifically the type of Mito that Landon has. Little is still known about FOD's and Mito in general, as each person presents differently. The expanded newborn screen has allowed children like Landon to be identified at birth, and has saved numerous lives including his. Had Landon not been caught on the nbs, he probably would had died when he was 10 months old and went into a metabolic crisis from a simple stomach bug.

Even though Landon is considered "mild" by medical terminology and diagnosis wise, this disease is in no means mild in the way it presents and effects these kids and adults that are affected by it. We have lost way to many friends to Mito, even ones that were 'mild.' It's heart breaking to have to try and explain to your 3 year old that they can't see their Mito friends anymore because God needed to play with them now.

 The banner brings awareness to so many more people throughout the U.S. and hopefully will help us spread the word about this disease and expanded newborn screening. Please if you get a minute share the pictures and help us spread the word.

The colored banner that was displayed in USA Today, one of our fellow FOD families dad made this, his daughter has MCAD.

This is the banner that was inside the paper under the Charity Spotlight!