Tuesday, April 08, 2014

Medical Update

 The past few weeks have been very full with all sorts of stuff including lots of medical things.  We went through Peritoneal Dialysis training from March 17 through March 28 at Davita.  

March 29 was Daddy's LAST day of hemodialysis.  Not only did we celebrate Pumpkin's birthday, we celebrated this too!  We were all so excited.  NO MORE HEMO!!!!!  What a relief.  
 We began the Peritoneal Dialysis on March 31.  Our P.D. nurse came to our apartment to be sure we had everything set up and to get us started.  You can see the stack of boxes behind Daddy.  We'll have a shipment of those every 2 weeks.  We had to buy a few things so he could have an area dedicated to P.D.  Thanks to  Dobbie and Papa for helping us out with that!
 For this first month he will do 4 exchanges a day.  An exchange consists of draining the fluid that has been dwelling inside of his peritoneum, then filling right back up.  He puts in 2 Liters of fluid which is a dextrose base.  The fluid dwells inside for 2-10 hours, then he does an exchange.  This first month he will always have fluid inside of him.  Gravity does the job of putting fluid in and getting it out.  The bag of fluid that needs to go in hangs on an I.V. pole and the bag that holds the fluid that drains lays on the floor then gravity goes to work once the proper clamps are unclamped.
Anyone who is in the room when he does an exchange has to wear a mask.  The transfer set where the tubing is attached to his catheter is only open for a second while he connects but it has to be as sterile as we can make it.  There is a lot of hand washing and hand sanitizing happening during this process.  
The picture below I "borrowed" from online.  This is what the transfer set looks like.  It is at the end of the catheter and is what the tubing for the bags attaches to.  It has to be scrubbed for a full minute with a bleach based cleaning solution anytime a connection is made and before the tubing is taken off.  When not in use a minicap that is full of iodine is placed on the end to keep it sterile.  The white part is the clamp that he opens and closes to let fluid in or keep it out.  The beige piece is where the tubing is connected or is what is covered by a minicap.  
 You can see the difference in the fluid colors.  The bag on the right is what goes in.  The bag on the left is what came out.  We LOVE that yellow color because we know it has pulled toxins out of his body and is doing what his kidneys can not do.  
This following picture isn't a fun one but certainly is the reality of what we've been going through.  Those patches and scars show what a journey it has been.  The top patch and wrapped piece are the chest catheter that has been used for him to have hemodialysis.  The three small square patches in the middle are from the gall bladder removal surgery.  The big patched area on the lower left is the new catheter.  We were in the midst of having it flushed a few times at Davita so it did have some blood in it post surgery.  It is all clear now.  The scars in the middle are from both surgeries to place the P.D. catheters.  There is also a small scar on the lower right from the first P.D. cath.  The nurses have joked that the girls will be able to play connect the dots on him when this is all over.  
And behold!!!!!  NO MORE CHEST CATHETER!  This came out on April 2 and we are so, so, so thankful.  It was in much longer than we had anticipated but it lasted and never got infected. 
No more chest cath and a healed P.D. cath exit site means HE CAN SHOWER!

If you heard someone singing the Hallelujah Chorus on Saturday, it was probably Daddy.  He has not been able to take a shower since October 21 when the first P.D. catheter was placed.  He could wash his hair and sponge bath from the sink like no one's business but he couldn't wait to get back in the shower.  

We went in to Davita today for the first set of labs to see how Daddy's body is handling the peritoneal dialysis.  We also talked about doing a 2 day training at the end of April so Daddy can switch to the cycler which is a machine that will do the peritoneal dialysis overnight.  It's going to be a busy month!

We still have no information on the donor front.  We know someone is being tested but have no way of finding out how far into the process he or she is.  We are so thankful that we have someone willing to go through this grueling testing process and we cling to that.  It is really hard not to know anything though.  We are praying that the surgery could happen over the summer.  This year has been very taxing on the girls and it would just be such a relief to have this done by the time they go back to school especially with Pumpkin started Kindergarten.  Please pray for God's perfect timing and that we would just be patient with that timing.  

On Sunday at church we sang this song.  I had not heard it before but I was a mess by the end.  The words hit me right in the heart.  The words "scars and struggles on the way" hit me hard.  I kept seeing that picture of Daddy's torso and the journey these past few months have been for us.  We have not been alone at all, never once did He leave us alone.  We continue to be in total awe of how He provides for our family.  It is mind boggling to us.  

"Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful."  

1 comment:

Joy ☺ said...

What a journey! I must say, you look great in a mask Mindy. I thank God for you. If I ever get sick, I'm coming to your house.