Snott Factory

I don't feel good, look how dark my eye circles are...they are the are the size of Texas!


Last night I put Makily to bed at 8 pm. This is earlier than her usual 10 pm bedtime. We had the LONG AWAITED gastro appt this morning at 9 am so I wanted to make sure we both got a good nights sleep right?

So around 3:30 AM I wake to hearing Makily coughing and retching like crazy. I run in there and her little face is covered in snot. :-( I turned her overnight feed off immediately.
Before I even got to her I knew she had a temp, she was panting (she does that when she has a fever) and her cheeks were RED. I picked her up and almost panicked when I felt how hot she was. I wiped her face up and she started retching AGAIN. She got herself together and flung herself backwards onto the bed (she wanted to lay back down) and the retching starts right back up. I sit her back up and she is fighting me crying, retching, slobbering and snotting everywhere.

Pitiful.

So I get her cleaned up again, check her temp (we do rectal temps around here....I don't trust those ear things as her canals are TINY and they are almost ALWAYS wrong with her).

It was 102.9.

I immediately start thinking "what if she has a febrile seizure" and how much I would FREAK if that happened so I race into our LOCKED med cabinet looking for the Tylenol. (Makily isn't supposed to have Motrin because she is still on Aspirin from her heart cath and Motrin also thins the blood) Can't find the Tylenol when I remember I sent it to the school "just in case" and all I have is Motrin.

I went ahead and gave the Motrin since she was so hot. I stripped her down and wiped her head and face with a wet washcloth (which she TOTALLY DID NOT appreciate in the least).

She laid on me panting until she fell back asleep. I went to lay her down and she immediately woke up and stared at me all pitiful, I of course felt guilty and picked her right back up. We slept on the couch like that for an hour before my back got so sore it woke me up. I laid her in her bed and she stayed asleep.

I obviously called and cancelled gastro as I was not dragging her to Orlando when she needs to see the pediatrician today. :-( I am glad I had rescheduled the sleep study already because that would have been great had she done that there last night. *sigh*

She woke up at 10 happy and "clapping feet" so I thought we were at least through the night and maybe she would be fever free during the day. No such like, she spiked 102.6 again at 11 so I dosed her with the Motrin again (I skipped her aspirin this morning). I started her on Pedialyte 45cc/hr continuous to keep her hydrated, I am not even trying formula until after she sees the pediatrician. So far no more retching. She is cool as a cucumber right now but we have an appointment with the lovely Dr. Pierre at 2:15 today.

In other news we are getting a Britax Adaptive Car seat in the next couple of weeks! I am so excited (you know you are a special needs mom when you get THIS excited over a car seat). I have looked at the Britax for a while but the $500+ price tag turned my stomach. Allen and I have been looking for a new car seat that will have the support Makily needs and we ha vent found anything that will grow with her. We had started talking about just shelling out the money for it when I told him I would see if CMS could help us. Diane at CMS APPROVED it IMMEDIATELY! She ordered it ALONG with the hardware to install the "latch" system in the van. (it surprisingly doesn't have it!).

I also submitted the "letter of medical necessity" to Apria for Makily to have a Sleep Safe bed. . I figured I would go directly through insurance on our first try to see if they approve it. Click here to see video of the bed "in action" starring Luke. I called BCBS of AL to see if they would give me a list of beds they cover and OF COURSE they won't (I am not surprised but I figured I could try right?). She said as long as they deem that the bed is necessary and "reasonable" it will be covered. I laughed openly at her and said "My kid is four and doesn't walk and you wouldn't pay for her wheelchair, we appealed it three times".

She had no response for that.

If they give us a hard time and don't approve it we again will go through CMS to get help. Typically when CMS gets involved things get covered by the insurance company....and eventually if insurance won't pay...CMS will.

Here is the letter I submitted to BCBS of AL to try and get the bed covered. Hey if it works maybe other parents will find this and be able to use it as a template. I must add writing letters like this about your child is REALLY depressing. Unfortunately it is the fastest and easiest way to get it done though because I know all the things the letter needs to include to get it approved. Dr. Pierre is a BUSY woman so it's faster for her, myself and Makily for me to write exactly what the letter has to say to get approved (you would be surprised some of the things they WON'T approve it for), her to review it and then sign it. I am so lucky to have a pediatrician that is so willing to help us with this stuff.

We'll see what they say:

To Whom It May Concern:



Makily Caldwell is a three and a half year old little girl with Emanuel Syndrome. I have followed Makily’s care since her birth. Makily presents with the following: She has moderate to severe hypotonia. Makily is non-verbal and non-mobile and has global developmental and severe cognitive delays. Makily is not potty trained and the large majority of children with Emanuel Syndrome never are.

Makily has good head and trunk control, she can sit up very well unassisted but is unable to go from laying to sitting up. She is able to go from sitting to laying down although unsafely as she will throw herself backwards. She is not able to pull herself up to stand. She can roll onto either side but will not roll onto her stomach. She enjoys kicking her feet and moving her arms but she is unable to walk or crawl.

She was diagnosed with severe gastrointestinal reflux and severe delayed gastric emptying at six weeks of age. She must sleep on an incline to prevent reflux and/or choking. She has a small airway that is secondary to Pierre Robin Sequence with a repaired cleft of the hard and soft palate. Makily has been 100% tube fed since she was six weeks old and has also been diagnosed with moderate obstructive sleep apnea for which she uses an apnea monitor at night. She has been diagnosed with laryngotrachealmalacia, a floppy epiglottis and severe dysphasia. Due to her dysphasia Makily has excessive oral secretions. Swallow studies have revealed that Makily does aspirate thin liquids (such as water or saliva).

Currently Makily is sleeping in a twin bed with a toddler rail on one side and the other side of the bed is pushed up against the wall. While she non mobile she does toss and turn in the bed and has wiggled down past the railing on several occasions. She fell out of the bed onto the floor recently. She is on continuous tube feeds throughout the night as well as the apnea monitor. Her falling out of the bed could result in her g tube being accidentally pulled out. Makily is in need of a medical grade bed so she may sleep safely and without traumatic incident. At present her parents are having to prop her up with pillows to keep her elevated and also to keep her from wiggling down too far in the bed and falling out. While this does remedy the falling issue it presents a new possible suffocation hazard. With the added pillows in the bed, Makily could wiggle underneath one or get trapped between the bed rail and bed and/or pillows and not be able to free herself. Makily could also become entangled in the feeding pump tubing and/or the apnea monitor cord and wiring. She also has a history of a grand mal seizure. She needs to sleep in a bed that does not have hard railing to prevent injury if seizure were to occur.

Since Makily also kicks her feet and then slams them down in bed it is also important that her bed have soft sides and/or railings. She is also on medications for reflux, seizures, excessive secretions and a blood thinner. The bed should have adjustable height so her parents can give her medications and also change her diaper there, as I mentioned before Makily is not potty trained.

The Sleep Safe would be a wonderful bed to meet all of Makily’s medical and safety needs. This bed can be raised and lowered to fit the parent and child’s needs. The entrapment problem is greatly reduced since the headboard and footboard extend past the mattress. The head of the bed also elevates which will decrease reflux and aspiration issues. The Sleep Safe bed also comes with the option of padded sides which would prevent injury to Makily if she were to have a seizure or kick the side of the bed. It is my medical opinion that this bed is a medical necessity for Makily Caldwell.

Sincerely
Dr. Yves-Lande Pierre


I'll update after Makily's appointment with Dr. Pierre.

Random Frustrations.

This will be an entry filled with lots of ranting and raving. It will be all over the place so just bear with me.

1. I am so INCREDIBLY frustrated with the foster licensing process right now I could just cry. I don't know what is going on but I seriously feel so defeated. I call our licensing lady once a week. Last week I call and ask what is going on. She tells me that they (God himself, the mayor, the president who the heck knows who "they" are) haven't even reviewed the FIRST draft of the home study that was sent. *sigh* I call today and asked again what was happening. SAME ANSWER it's STILL not even been reviewed! I just don't understand. We have been going through this process for ALMOST A YEAR NOW! A YEAR!!! I am constantly hearing how there is such a shortage of foster parents, WELL NOW I KNOW WHY! They DRAG their feet so much! I have jumped through every hoop, gotten every piece of paper work, and it's so frustrating that I just have to sit here and wait for someone else to review this stuff. I asked why it hadn't been reviewed and was told "I don't know". What's worse is even when "they"approve it, IT STILL HAS TO GO TO THE STATE OF FLORIDA FOR REVIEW and approval, that can take ANOTHER two weeks (so in their time two months). I don't understand how people like THIS
are licensed to foster while we sit and WAIT! What's worse is I have no one to complain to. I don't want to cause a huge stink because I don't want them to think I am some crazy maniac lady. I WISH WE HAD $30,000 WE WOULD JUST ADOPT! Fertility issues SUCK!

2. My poor baby is a retching maniac lately. The last three nights I have woken up hearing her trying to vomit on the baby monitor. I run in there and sit her up. Last night was really bad and she had only had a little over half of her feed. Our gastro appt is coming up and I am going to speak with him and the nutritionist about putting Makily on a puree diet through her g tube. Zachary's mommy Nikki, contacted me recently about it and told me how much it has helped Zachary so I am hoping it will do the same for Makily. Some thing's gotta give. I feel so bad for her and I don't know what else to do. I spoke with the GI office a week or so ago and they did tell me her upper GI showed "minimal reflux going up past the esophagus". She said that her Nissen is still working except one TINY part that is allowing the "minimal reflux. That could be causing her to retch more but that there isn't much we can do about it other than what we are doing. **I have had people ask me what retching is, well here is a video I found (just a warning, it's not fun to watch). This is exactly what Makily does, it can last anywhere from a few seconds to five minutes of this. When she is able to stop and catch her breath, she cries which triggers the retching again. :-(

3. I hate apostrophe's and every blog I do, I have to go back through spell check and have them inserted (told you this would be random).

4. I had a postal worker harass me yesterday about tape. YES TAPE. I had ebay'd some stuff and took it to the TINY post office down by my house. He came OUT of his cubby to inspect my packages. He said I used the wrong tape. Now understand that I tape everything LIKE CRAZY because I don't want my label to come off or the package to come undone, most of my packages look ridiculous because of the tape. He actually said he wouldn't take my package because I didn't use "clear tape, not scotch or masking". He said my label wasn't going to stay on...I laughed and said there is no way that is coming off, you and I both know that. He told me that I would have to repackage it or take it elsewhere, he wasn't accepting it. Then I thought in my head "am i really sitting here arguing about tape with this man?" SERIOUSLY? I went to the store, bought tape and scissors and came back. I asked him if my tape was "regulation". He said it was but maybe too thin and then asked me if I wanted to use his!?!? I wouldn't have used his tape if it was the last piece of tape on the entire planet. Freaking Tape Nazi.

On a good note the montage for Makily's birthday is coming along nicely. I have more than half of it done already! I figured it would take me longer than it has. I am trying to wait to post it until her birthday but I don't know if I will be able to.