Danielles MLD Personal Page

So here we are in room 692 at Children’s. It’s the transplant floor. The only spot they had for us. I would have gladly waited till Monday if we could have been back on the neurology floor but apparently is was urgent enough to have her here tonight. She is doing very well. In fact the last 3 days she has been doing very well. She’s seems to do this to us though. Everytime we mentioned hospitalization it’s as if she is showing us she doesn’t need to go but then she goes back to showing more and more symptoms. She already had an x-ray tonight and we’ve met w/3 docs. One for sure an attending but the rest I’m assuming were residents. Can’t remember one of their names, I’m sure they can’t remember ours either so I don’t feel bad…LOL!!!! Sleeping arrangements are a bit cramped. My pull out bed is right next to the bathroom door and our roommate is a teenager who can actually use the bathroom. Not sure what will happen in the middle of the night when the roommate needs to use the bathroom and my bed is blocking the door…..hahaha!!!! The PICC line is scheduled for early in the morning so I’m hoping that everything goes well and we’re home soon.

Thanks for checking up on Danielle.

With love,

Megan

As I put it to a good friend of mine last night…..Hi Ho Hi Ho off to the hospital we go……again! The report from the radiologist came back as the pneumatosis has gotten considerably worse since she was hospitalized in Dec. The GI is concerned about a perforated bowel happening which would lead to sepsis……that most likely would end her life because of all the other impairments she has. If this were to happen I’m told it’s very painful, much like an appendix bursting and nobody needs to go through that if it can be avoided so to try to stop that from happening she is going to be admitted sometime between tomorrow and Monday for a PICC line to be placed. This is an IV that is placed in the upper arm w/a long catherder. Through this she will receive TPN/lipids in place of formula going through her gut. The idea is to rest her gut for 2 months while treating the pneumatosis, hoping that heals and see where things stand at the end of 8 weeks or so. This might have a huge impact on our nursing care because LPN’s are not aloud to work w/IV’s and LPN’s make up half of our care at home. I’m thinking there is a way around this somehow. Maybe something like timing feedings (if you will) so that there doesn’t have to be connections and disconnections on LPN’s shift. I don’t know, I’ll figure all that out in the hospital.

This is not an invasive procedure and seems pretty routine so we are not anticipating any problems. I’ve heard though that conditions surrounding cleaning, dressing changes, etc. have to be very sterile because of the risk of infection. It’s still not clear who will be doing all of that but I have a feeling it will be me. However, blood has to be monitored once a week so I’m not sure if a different nurse will be coming to the house for that or if our nurses will be equipped for that provided the agency can give them what they need.

Anyway, lots to figure out. I’ll post more when I know more.

Thanks for checking in on Danielle today.

With love,

Megan

Already February……geez. Where does the time go? So a few updates on Danielle. Nothing came of the results from the endocrinologist. So thankfully I don’t have to do anything in that area. Secondly, the results from the upper GI came in. There is no obstruction or enlarged anything that is contributing to the daily bouts of vomiting/retching. However, the pneumatosis is worse than is was back in December. There seems to be conflicting advice coming from a few doctors so I should know more on Friday about what our options are if any. She’s still having these episodes 3 times a day, this may be the way it is for the rest of her life, as I”m told. Amazing that she can show us a small smile from time to time.

She got her new car seat. It’s so big! It can accommodate a person up to 100lbs. She’s going to look like a baby in it. Her wheelchair is on it’s way. The provider isn’t the fastest at submitting claims to the insurance company so as soon as they do that we can have it delivered in a couple of weeks.

Here’s hoping Spring will come soon……

Megan

Excuse the post everyone. Just trying to see if I can properly post pictures now. Looks like I can. Thanks Dean!!!!!!

Ice Skating in Chicago

There hasn’t been much going on this past week. I kept Danielle home from school all last week because the weather was just too icky to send her out, and as it was school was cancelled on Thursday and Friday.

She developed a fever on saturday morning so her weekend was pretty crappy. Sometime Sunday evening it seemed to go away but the nurse said early Monday morning it was starting to come back so we’ll see how today goes. Since there is no school today anyway it’ll be good for her to have another complete day of rest.

Speaking of fevers Anthony woke up at 2am w/a cough and fever the nurse said. I didn’t even realize that he went downstairs. She took care of him for me. That was really nice of her. Two for the price of one…..nice!

Anthony had a friend over on saturday. Both of them had a little bit of cabin fever so it was nice they both could get outside to play. The weekend before Tony built a sledding hill in the back yard so they had fun doing that for a bit. The attention span isn’t there yet for hours of sledding so it was more like 15 minutes outside, 1 hour inside, 15 minutes outside….etc. lol!

I realize my stories are going backwards in days but it’s how I remember it all…..lol!!! So Danielle had a doctors app on Thursday. It seemed like we were the only warm blooded objects out in -25 weather. So we drove out to Glenview just to be told to schedule yet another app at Children’s in Chicago for an upper GI. Why someone w/half a brain couldn’t have suggested this when we were admitted back in Dec. for the exact same problem I don’t know. Somewhere in the beginning of the week the home medical supply company called to say that they still couldn’t get the pediatric verison of the formula she is suppose to be on. Instead though they could send out the adult version as long as I added a ingredient or two. Basically we were an egg short of a cake. Danielle’s pediatrician wasn’t happy w/this at all and only approved it for up to a week. The brains behind this operation forgot the basic concept of oil and water not mixing very well and it turned into a complete mess. Plus she wasn’t getting nearly everything she needs. Thankfully I got a call Friday that the supply company was sending out the correct stuff. Everything was back to normal Friday evening.

Daisy started w/training again on Thursday. It was a bit of a rude awakening for her. She did not appreciate the concept of correction for everything again. Plus there are so many dogs in this class, which is a great tool for distraction, but there is also a puppy class going on 10 feet away that is filled w/hyper puppies. She did good considering. At the end of class we worked on a bit of agility training. She was the only one who looked graceful or didn’t need to be poked along w/treats. Those long legs of hers are finally being put to use for her instead of getting in the way. Hahaha!

Here’s hoping for a quite week.

With love,

Megan

Hi Everyone,

I’ve been having some issues w/this blog lately but it seems like things have been fixed. If you have subscribed to updates in the past and want to continue getting them please resubscribe.

I will be updating later on .

Thanks, Megan

Wow, it seem’s weird to type out 2009! Hoping everyone had a great New Year. We had an uneventful one, just the way I like it.

Danielle lost 2 teeth today!! She must have lost one during the night (and probably swallowed it) because none of the nurses said anything to me until today when the nurse on staff brushed her teeth. Then she noticed that another one was pretty loose so after Danielle’s nap I took a feel and it was ready to come out. She wouldn’t let me fool with it but with her pushing her tongue against my finger she broke it loose herself. There are two teeth up top that have been loose for months but they are still hanging in there.

She has had a couple good days lately. Still an episode a day either at night or during the day. I have backed off on her intake some so I don’t know if that’s what is helping or not. She has a GI appointment later in the month to get another opinion on the situation.

Both kids go back to school on Monday. It seems like forever that they’ve been off. Anthony and I have been playing many games since Santa brought them. He catches on so fast. His favorites right now are crazy 8′s, go fish, memory and Hi Ho Cherri-O. I didn’t think he’d be ready for crazy 8′s or go fish……but I was wrong. Danielle has been getting mani/pedi’s weekly from the nurses. We sit together and play her xylophone and watch her flying fairy around the room. That’s a sight to see because Daisy believes she can jump up and attack the flying fairy. The fairy got stuck flying above the frig and Daisy gently jumped and put her front paws on the very top of the frig then jumped one more time attempting the fairy but landed on her back. Ouch! She got up and ran away thinking the fairy did it to her. That was so funny, thank goodness she wasn’t hurt. Training starts back up for her again later this month too.

Hope that everyone has a happy and healthy year.

With love,

Megan