home from hospital today

[Guest guest]

Hello everyone! Thank you for all the well wishes! came home from the

hospital today. She is doing great and we are on the road to recovery. She had a

pic line placed on Mon., but it was not placed well so we had to have a central

line placed yesterday. Radiology said that she does not have many good veins and

the ones she has are very small. They did not think they could get a pic line

placed any better than what they did on Mon. I have been trained on her IV meds

and did my first one this afternoon so at least we are home. I am fighting with

the insurance because they are refusing to pay for the pulmozyme that she needs

for the next 4 weeks. It is $6,000.00 for her to have it twice a day for 4 weeks

if the insurance won't pay. We went through this with them before and they

wouldn't cover it. We will fight longer this time because this is something that

she will need once in a while over the years. She is also on Tobi nebs twice a

day for 4 weeks which will cost us about

$800.00 after insurance. She is getting albuteral treatments every 4 hrs and

the daily antibiotic for the kidney reflux once a day. She went into the

hospital on no meds and now we look like a drug store. I have no idea how we are

going to pay for all of this, but what can we do? Luckily, we have a pharmacy

that will let us make payments on it. She has to have her meds to get better.

She came home on oxygen and her pulse ox again when she is sleeping and is not

eating much by mouth so we are starting that process over again.

During all of this, we have discovered that her nasal passages are very

narrow. We have not found an opening on the left side at all, but can find it on

the right if you get in just the right spot. The pulmomologist thinks that she

has the choanal stenosis even though she had a bilateral cleft lip and palate.

We are setting up an appointment with the urologist and she will go over all of

the kidney reflux stuff with us. They did tell us that it is grade I to grade II

reflux.

When we were leaving the hospital, wanted to walk. She had such a hard

time. Her legs are very floppy right now and she is falling a lot. I think we

are going to need lots of therapy to get back to where we were.

On top of all of this, my oldest daughter broke her arm on Wed. and my middle

daughter was put on oral steroids long term for asthma. I think we have had

enough happen that we should be due for some good luck.

I am a little overwhelmed right now, so I might have babbled here a little. I

just needed to get this out of my system.

Mom to 3 yrs, Marissa 5 yrs and Dalani almost 10 yrs.

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