Wednesday, April 16, 2014

Another Daddy Update

Unfortunately I have another update on Daddy.  Updates usually mean something has happened and in this case, it does.  Peritoneal Dialysis was going great.  He was feeling really good, had more energy, and felt confident in doing it.  This past Thursday Peanut got the flu and Daddy wasn't feeling that great but wasn't sure if it was flu or just kidney stuff.  Thursday he also noticed that his exchange time which was taking 20-30 minutes was increasing.  By Friday it was taking forever.  He was in touch with the PD nurse and they thought maybe it was a bad batch of bags.  She had him switch to a different box of bags.  That didn't work.  That night he was in touch with the on-call dialysis nurse who thought maybe his cath was clogged with fibrin.  He was only able to get two of his four exchanges in on Friday.

On Saturday it was just worse.  We talked to our nephrologist in the early afternoon and she too thought it was fibrin and that we should do what we could dialysis wise until Monday when he could get in to Davita and get some heparin which would dissolve the fibrin.  By Saturday night when he went to drain, he was only getting small drips of the 2 liters out.  We called our doctor again, who thankfully just happened to be the on call nephrologist for the weekend.  She sent us to the hospital to be directly admitted on the dialysis floor.
An incredible friend came over at 11pm to be at the apartment while the girls slept.  We had to wait almost two hours once we got the hospital for a room to be opened up and cleaned.  Then we had to wait another two hours for the lab to get his dialysate bag to be filled with heparin and ready for use.  The dialysis nurse came in at 4:00 a.m. to fill him with 1 liter of fluid.  It took forever for the fluid to go in which concerned the nurse greatly.  Around 5:30 she came back to drain him but again could only get drips to come out.  (Hospital PJ's are so groovy!)

Later in the morning x-rays were done to see if they could see what the problem was.  Our nephrologist came in later in the morning to tell us the problem was not what she wanted to see.  The catheter should be laying the pelvic area inside but had migrated to the upper left quadrant of his abdomen.  It was not even in the dialysate to drain it.  You can see from our Neprhologist's nifty artwork what happened.  The long blue line is where the cath should be, the arrow shows where it went.
We were sent home and told surgery was the next step to see if they could reposition the existing catheter.  If not, then they would replace it.

We thought surgery would be on Tuesday but Daddy called me at work on Monday at 11:30 to tell me surgery was happening that day at 4 and we had to be at the hospital at 2!  WOW!  I had to find childcare and it had to be someone who could take the girls to the first gymnastic lesson which they had  been dying of excitement about.  I had a friend contact me literally within 2 minutes of getting a text plea saying she could do it.  Seriously, we're so blessed.

I swung by the gymnastics place to sign permission papers, got Pumpkin some lunch, hit the school to tell Peanut what was going on, got the girls gymnastics things ready, dropped Pumpkin off at another friend's house, then headed with Daddy to the hospital.  Can we say whirlwind?

We're pros at this pre-op and waiting thing.  Our associate pastor came to see Daddy before he headed back and to pray with us.  That really meant so much to us.  Our church has stood beside us through all of this.  Amazes us!
The surgery took about an hour and a half.  The surgeon told me the catheter was all snarled up in the omentum and was clogged with stuff so he was not able to reposition it but had to replace it.  After talking he said, "You know this road of dialysis is just a hard one and is usually filled with a lot of disappointments.  It's something you have to get used to."

Daddy came home later in the evening and was in a lot of pain which lasted through Tuesdsay.  Tuesday afternoon we went to Davita to begin training on the cycler which we will start at home on Friday night.  Daddy will use this to do peritoneal dialysis while he is sleeping.

We were supposed to start doing the manual PD at home with just one liter going in for two hours at a time.  He needed to lay completely flat so that no pressure would be on the new exit site (the spot where the new cath comes out of his body).  Any pressure could cause the site to leak.  Due to laying flat, we couldn't pull any fluid out so that didn't work.  He will do an exchange tomorrow for a bit then start in on Friday night.  Thankfully his numbers were good so he can maintain for a week.  He is starting to feel pretty rotten though since he hasn't had dialysis and is recovering from surgery.

It has been such a long road and we're both really worn out and feel stretched pretty thin.  Oh, how we can't wait until we hear news about the transplant and that it is soon.  We don't know anything at this point.

I wrote this quickly with everyone asking me to do things and get things, so hopefully it makes sense!

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