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!

Daddy Daughter Dance 2014

 A few weeks ago, I received information about this year's Daddy and Daughter Dance.  I talked to Daddy about taking the girls.  At that point he just did not feel well at all and was incredibly tired all of the time.  He wasn't sure if he'd be up to taking them.  Well then he started peritoneal dialysis on March 31 and started feeling so much better and had more energy.  I talked to him about it again a few days before the dance and he said he did want to take them.  Imagine their excitement when he asked them to go with him.

Saturday afternoon we started our dance make-overs.  We started off with a bubble bath at The Salon de Linda!  The girls loved Linda their stylist, a.k.a. Mommy.

Then we moved on to our special "spa robes" to do manicures.  
 This one wanted curlers in her hair.  This picture takes my breath away.  She looks so grown up and so beautiful.
 Finally they were all dolled up and had some place very special to go.

 Daddy cleans up well, doesn't he?  So much to be happy about!

The girls got to meet some incredibly loved young ladies at the dance.  If you don't know who these girls are, then you've been living under a rock the past few months.  This is Anna and Elsa from Frozen.  At the end of the night when they all got home, Pumpkin ran into the house shouting to me that they had met them at the dance.  She was thrilled!
I also heard that when "Let it Go" started playing, the dance hall echoed with little girls singing along, so much so  that they turned the actual music down to let the girls take it away!
What a special night!  They all needed this so much.
Daddy even added extra sweetness to the night by taking them to Orange Leaf afterwards.  

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."  

The Pirate Fairy

We had a sleepover with some close buddies last Friday night.  The big event was watching the new Tinkerbell movie, The Pirate Fairy.  The sweet little girls turned into pirates.  Argh!

Preschool Guest Day

Last Wednesday was Guest Day at Pumpkin's preschool.  She invited Daddy to come with her and he happily obliged.  They had so much fun together as you can tell. 

 So thankful Daddy could go with Pumpkin and make her feel so special and so loved.  Her favorite part of the day was playing dinosaurs with him for a little bit.

Birthday with Family

Pumpkin woke up on her actual birthday looking bigger!  5 years old…how did it happen?  We made birthday pancakes together sprinkled with sprinkles.  She used her new baking gear that she received from a friend the day before.  

At lunch we had some very special guests…Pumpkin's grandparents to help us celebrate her birthday.  The birthday girl chose lasagna for lunch.  
She was a little bit excited about opening presents.  

Peanut picked out a Barbie car to give to Pumpkin.  I'm not sure who was more excited the giver or the receiver.  
Dobbie made the girls each a kitty quilt.  They are so adorable.
Pumpkin also received her first American Girl doll from Dobbie.  She had picked out the newest doll Isabelle.  She is adorable and very well loved.

Both of the girls got money from Gigi so that they can start gymnastics lessons.  They have been begging for lessons for quite some time. They are very excited.
The birthday girl chose a blueberry pie to blow her candles out on.  Mommy was relieved…not another cake.
Here are the birthday girl and Peanut with their special guests.  We had a great day with these awesome people whom we love dearly.

Happy Birthday Pumpkin!

Monday, April 07, 2014

Pumpkin's Frozen Birthday

Pumpkin's birthday came right smack dab in the busiest week I've had in ages.  The Saturday before I sat in tears, e-mailing some friends asking them to pray for me to endure the week and that everything would get done.  We were in the midst of training for Peritoneal Dialysis, family was visiting for a few days, I was getting things around (328 things to be exact) to put in a consignment sale, preparing for Pumpkin's birthday, preparing for Daddy to start doing dialysis at home, working, and keeping up with normal day-to-day stuff.  I desperately didn't want Pumpkin's birthday to be this huge thing that I was dreading.  So I bit off each task one at a time.  Thursday I dropped off all of my consignment sale things and moved on to prepping for her birthday.  I wouldn't let myself worrying about the dialysis stuff until her parties were over.  It worked.  I had a great time getting things ready.  I LOVE my girls' birthdays.  I LOVE planning and prepping.  My favorite part is seeing their faces when it's all done and ready to go.  I LOVE the joy it gives them.  That gives me such joy.  
If you haven't seen or heard of Frozen, you have to be living under a rock.  This hit movie was a huge hit in our house.  We have the soundtrack and the girls have every song memorized.  Coincidentally the dvd version of the movie came out the week before Pumpkin's birthday so when she said she wanted a Frozen birthday, I knew it was meant to be.  Her first gift was her own copy of the movie.  She was so excited!
We invited just a few little girls over for a breakfast/pajama party to celebrate Pumpkin and watch Frozen.  Pumpkin was so excited about the big day.  We had breakfast foods ready for the girls to eat while they watched the movie.  There were breakfast sandwiches (scrambled eggs, bacon, and cheese wrapped in crescent rolls and baked), fruit skewers, powdered sugar donut snowmen (candy corn stuck in the hole for carrot nose), and "ice cube" jello jigglers (these were the hit and so easy).
I loved these the most!  They were so pretty and very yummy.  There were NONE left after the party.
We had to have some "melted snow" to drink too in honor of Olaf.
Watching Frozen is pretty serious business if you are a little girls these days.
Pumpkin received some really great gifts from her buddies.  
This cake was so easy and fun.  I just frosted a white cake with white frosting.  I even used canned.  Homemade was not happening this year!  I made blue rock peppermint candy that I broke up to look like pieces of ice all over the cake.  A sprinkling of edible clear glitter and there you have it!  EASY!  And the birthday girl loved it.  You should have seen her face when she discovered that Mommy can make candy.  Priceless!
Elsa and Anna stood guard by the cake.  We had to use a little friend's Elsa doll because every small Elsa doll in the country is sold out!  I looked everywhere.  I even had a friend scour the two story Disney store in New York City.  They are gone!!!  

For the goodie bags I made a batch of white play dough and kneaded in a small bottle of glitter to make it sparkle like snow.  There was also a small bag of the rock candy and a few other small goodies. 
These girls were SO awesome!  We had such a great time celebrating with them.