Friday, December 23, 2011

Is it Really Christmas?

I hate admit this but I am in a serious Christmas funk.  Christmas Eve is tomorrow and I am not done shopping or making things.  We have had so much on our minds this season so wrapping my head around Christmas has been so difficult.

Daddy's biopsy was last Tuesday and went very well except for some mistakes in the "system".  His doctor's orders were sent to the wrong place, our nephrologist was not the one who did the biopsy which is what we were expecting, and then the orders for him to have a 23 in hospital observation were not faxed.  The most important part was the biopsy and it went well so for that we are grateful.  Daddy said it was not painful just a pressure sensation.


We were told we would have the results by Monday.  When Monday rolled around and we had not heard anything, we both called the doctor's office only to be told by the assistant that we were scheduled to meet with the doctor on January 4 so he would go over everything with us then.  Daddy who called second told her that we had been told we would receive a phone call with the results and that is what we wanted. 


Tuesday still after no phone call from them, we called several times trying to get somewhere.  Finally I spoke with the receptionist and told her our frustrations.  She was so nice and tried to explain why things had happened they way they had and then she told us that our doctor was on vacation.  No one had mentioned that to us at all.  We were told that Daddy could drive back to the hospital (an hour away) sign his "patient's right to know" form and get the results himself, which is what he did on Wednesday. 


The results were not what we were hoping and praying for.  Daddy has been diagnosed with FSGS which increases the risk for dialysis and/or kidney transplant significantly.  Right now we feel like the blind leading the blind as we try to figure what he can and can't eat and such.  We are hoping his body will respond to medicine but we will not know what the next step is until we meet on Jan. 4 with the doctor. 


He seemed to be recovering well from the biopsy until two days ago when the spot started causing him discomfort.  He has had major trouble sleeping as it is worse when he lays down.  So yesterday he called the nephrologist's office and was told to go to our local hospital for blood work and a urinalysis. 

Then we were to head back to the hospital where the biopsy was done (an hour away) for an ultrasound on the kidneys today. 

We did that.  We registered at the front desk, got Daddy's paperwork and ID bracelet then headed to the radiology/ultrasound department where we ran into a problem.  They were not expecting us.  Daddy's name was not on the list.  The specialist had not been contacted to schedule the procedure.  (I thought to myself, "Why does the specialist need to know?")  We met with a specialist who seemed very confused as to why we were there again.  He said we could do an ultrasound or CAT scan to see what was going on in the kidney.  He just seemed aloof as to what to do.  Finally an RN came in and we told her from start to finish what was going on and she started investigating only to discover we were on the list for an ultrasound.  She then went to the radiology/ultrasound check-in and found out that the woman at the front desk had printed out Daddy's biopsy orders from LAST week and this receptionist didn't realize it was from last week.  She thought we were there for a biopsy!!!!!!!!!  OH MY WORD!

Finally everything was figured out and within 10 minutes Daddy was getting his ultrasound and we were on our way.

I'm worn out and so is Daddy.  It has been quite a week. 

I love Christmas so much but this one has just been hard.  It's hard to even think of getting things ready or celebrating.  I am so thankful for our little girls who seem unaffected and are so extremely excited.  Our advent activities have went out the window this week.  They have been playing at friends' homes while I run Daddy around so I keep saying, "Surprise!  Now you get to go to 'So and so's' house to play!"  Happy Advent Activity!

This afternoon I need to make a mad dash to get some more Christmas shopping done and tonight I will be sewing like a mad woman.  I will still be shopping next week for two nieces who will be getting belated Christmas gifts!  (So sorry sweet nieces!)

This is where we're at!  But Gigi just called and said he is on his way to see us.  YEAH!  He is worried about our little family and wants to see us for himself.  Dobbie and Papa are coming on Christmas Day for a few days then we will head to Gigi's for a few days.  Ahhhh....I'm hoping and praying that these next few days will just slow down, Daddy will feel good and we can just truly celebrate the meaning of this Christmas and Christ did for us.

And like Cora told Daddy yesterday, "Daddy, God knew you would have to go to the hospital.  He knew your kidney would need a shot."  Yes, He did know.  None of this surprises Him.  We are in the clutch of His hand and He has promised not to let go.

Thank you for your prayers for us.  We appreciate it more than words can say!  We will certainly keep you updated on any news we find out. 

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