CRAZY DAY!!!

Good Lord, if yesterday was a quiet day today was a crazy day.....

It started great, got up early, met a friend for a quick breakfast, then rushed back home to pick up Selah, her nurse and Steve.  I'm having very bad neck/shoulder spasms and tightnessagain  so I needed Steve to help get Selah in and out of the van.  It's so hard to move her into and out of the van and to put the thousand pound (small exaggeration) wheelchair in to the van. 

We had the BEST appointment with the pulmologist!  She was just amazing!  She totally got everything and understood the situation.  We have a PLAN to get Selah well, and to maintain her!  And if she does get sick enough to go to the hospital we also have a plan for that!  Thank God!

So the plan is to add the Tobramycin which is an inhaled antibiotic to her meds.  She will be on it for 28 days and then off for 28 days and then back on.  The liquid antibiotic was increased due to Miss Selah now weighing 48 pounds...and the doctor could go up on the med.  So our plan is to see if this will work for her.

Selah is still "off" not well, so hopefully that will work, if not, then the doctor will put Selah in the hospital (not St Joe's but Tampa General) and have a PIC line put in for IV antibiotics and then we can take her home on that and flush out her system.

So either way we are covered and I really liked the energy and how the whole office worked together and were focused on Selah.  I'm so glad our pediatrician sent us there, it was a good call and I really think this will put Selah on the road to recovery AND progress!  She can't be weaned off the trach until she is well enough to pass all the testing.  This doctor feels coming off the trach will be the best thing for her but we have to get her to the point she can do it!

THEN the CRAZINESS began........we got home, and get a phone call from our pharmacy saying that we have to go through a mail order pharmacy for the med.  Honestly I was on the phone from 2pm till 7pm arranging for her medicine.  WELCOME to Obamacare....it is ugly!   During all of this I was interviewing a new nurse to take our day nurse's position AND I get told that our family insurance just denied nursing care for Selah.  Since she has medicaid as a secondary, she'll still get the 24 hour nursing and I've already started the appeal to our insurance and feel confident that she will be reinstated.  Our private insurance has never denied anything until Selah's accident and this is the 2nd time we've had something major denied.  We won the last appeal and I'm sure we will this time too.  The reason we want our insurance to pay is to be honest it pays more than medicaid and of course nursing staff would rather have the private pay than medicaid! 

So all this is going on, I'm trying to get in touch with the doctor ....at times I had phones in both ears, and the nurse was on a phone.... it's Friday afternoon and a long weekend in coming.  We were desperate!   I find out the kind of Tobramycin that was ordered costs $6000 !!!!!!!!   Can you believe that???????   So the pharmacy was forced to make us order from the mail order pharmacy BUT the quickest we could get it for her was Monday or Tuesday.....    So the doctor changed the prescription to the same med but the ONLY difference is we have to draw the med up in a syringe and put it the inhaler ourselves rather than it being pre measured out.....  that brought the price down to our co pay of $7......   a $5993 difference!!!!!!!!!!     CAN YOU BELIEVE THAT???????  (I actually didnt' even pay at the pharmacy, he said he'd straighten it out on Tuesday and between the two insurances, we probably won't owe anything- we didn't last time but even if we owe a co pay....that is nothing compared to the other med!) 

BUT no one had the cheap medicine.....EXCEPT for one wonderful pharmacy in Brandon...an hour drive away....and they closed at 7:30 pm....the doctor found them for us at 7pm.....we drove down there and they stayed opened till 7:45 pm JUST for us!!!!!   THANK YOU BILL'S PHARMACY OF BRANDON ON HWY 60 EAST!!!!!!!!  If you live near that area, give them your business!  What a great group of folks and they were happy to do that for us and so very gracious!!!!    

So......what a crazy day.... but I am thankful at the end of the day, Selah has the medicine that hopefully can clear her out completely and get her well.  So many people helped us today (and a few were not too helpful)   Driving home with the precious medicine on my lap, looking at the beautiful sunset reflected on the high clouds, like only Florida has....I had a very thankful heart...might have had to repent for a couple of things I said today(I keep it real) ....but I was thankful that God worked all this out for Selah today.  I'm not too worried about the nursing appeal, I'm sure that will work out too. 


WHEW!  I feel like I've been racing all day long....thanks for your prayers, despite all the difficulties of today, I do think this will be the change Selah needs to keep her trach clear!  This will make a big difference for her.  She did not have a good night last night, she didn't fall asleep till 5am but no storming but her heart rate fluctuated up and down....that is not a good sign for her.  I feel she is "on the fence" and could go either way.  I think this new medicine and going up on a higher dose on the oral antibiotic will push her over the fence to the WELL side:)  I certainly hope so!!!   It has certainly been a team effort to try and do something to get her well and keep her out of going to the hospital every two weeks!!  Thanks to everyone who helped!

I know I was going to cook and try out some crock pot recipes....well that didn't happen!  We ate tonight thanks to Sonnys BBQ :)   I was also going to post some pics of the new hair cuts...ummm  that didn't happen either....but here is one cute picture of Steve and Sam tonight in the van on our road trip for the medicine....

 

 

$200 came in today for our orphan fund!  So we are at $810 for this month, with only $190 to go to meet the goal of $1000!!!!!!  Please see the sidebar at the top of the blog that tells about our Orphan Ministry and how to give.  This month it is for the little girl we had hoped to go back for but now a friend is adopting her and two other children!   We are so blessed to be able to give towards this!

 

Please keep Selah in prayer!