Hospitalized for 3 weeks, starting NOW! :/
Sooooo…… last night I went out and bought the Ivory soap and pedialyte to prepare Brianna for her SWEAT test to test for Cystic Fibrosis (they told me I could only bathe her with that and to make sure she was well hydrated). I bought her some really cute Mickey and Minnie Pj’s and went home to get her ready for her test the following morning (today).
Bathing her was a disaster, it turned out to be a sink bath instead of a bathtub bath but we got that out of the way I changed her into her new Pjs so she would be ready to go in the morning after a diapy change (diaper change). So far so good, right…. So we think.
She falls asleep immediately, awesome. Perfect. She will be well rested for tomorrows BIG day… little did we know how big of a day this was going to turn out to be.
This morning I got up to get Hailey ready for school, got Bri ready for the test and when my husband went to take Hailey to school I got ready… as soon as I got out of the shower my cell phone rings, the caller ID reads “Childrens Hospital”…..
My heart sinks.
Its Dr. Moser, Briannas pulmonary, she is calling to discuss the CTscan that Brianna had on Monday. She said her lung shows “soooome improvement” YAY happy news right?... well then she proceeds to say that she isn’t comfortable having her out of the hospital… thump thump thump my heart is pounding like crazy now…. She proceeds to say that she wants to go “all in” NOW and give her lung some tough love… NOW. She tells me she wants to admit her for 3 weeks! Yes you read that right for 3 weeks. She asked if Bri had her vest yet I said no, because the insurance hasn’t approved it yet and we don’t have enough raised to make a decent offer yet and then she asked if Bri started her pulmozyme (the $100 a day med) I said no because medical denied it…. She said that gave her ALL that much more reasons to want to admit her “TODAY”….
She said she will put her on IV antibiotics for 3 weeks…. OMG my poor baby is going to have an IV for 3 WHOLE WEEKS and I KNOW this wont be ONE poke with ONE IV for the 3 weeks NOPE. IT WILL require many many pokes and many IV changes with more pokes that’s not including the blood work draws they will be doing during these three weeks. SHOOT!
She said she needs to perform a bronchoscopy under anesthesia to suction her left lung. Sigh.
She said she will be doing chest x-rays every 4th day. Sigh.
She said they will most likely take out her tonsils and adenoids during this stay. Sigh.
The bright side (if you can call it that) is that she will begin her VEST treatments in the hospital within the next few days if not tonight using one of the hospital treatment vests and they will be done with a professional respiratory therapist. She will also start her pulmozyme in the hospital since the stupid insurance denied it. So in that sense sure it’s a “good thing”.
Yet is having to hospitalize my baby for three freaking weeks because the insurance didn’t cover her medical equipment soon enough “convenient” or “any better” HELL NO.
Ideally and how it was originally planned we were doing everything outpatient until she had to have a bronchoscopy which would have been one day stay and her tonsiladenoidectomy which would have been a 2 day stay… the insurance was supposed to cover her equipment and medicine ASAP and keep my baby at home DAMN IT. Not have my in a hospital room in a hospital crib for three entire weeks no no no hooked up to an IV for three weeks in a row no no no no no no no. NO. I was supposed to keep working and going home to my babies. Not taking my oldest to school going to work picking her up during my lunch taking her to be taken care of, back to work, after work to the hospital break the husband get no sleep and the next morning do it all over again… NO NO NO NO. STUPID insurance this isn’t how it was supposed to be we were supposed to do it all as out patient and because you are useless morons now my daughter will be condemned to a stupid hospital bed for 3 entire weeks…
Stupid stupid stupid insurance. This hospitalization and in patient treatments will cost you 10,000 times more than it would have cost you to cover the stupid VEST and the meds !
Sigh.
Well 3 weeks of crazy hectic psychotic depressing hell begins, now. :/
Oh and gee I cannot wait for the SWEAT test results tomorrow… can we catch a break? God can we get negative results on the Cystic Fibrosis so that we may see a ray of sunlight in this darkness? Please?
A very worried, very scasred, very sad, very depressed and lost mommy.
Araceli
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