Friday, December 27, 2013
The girls had a good Christmas. Kamiah loves her new baby gear, and Mariska is in heaven playing with her doll house.
Merry Christmas! a little late, but with love all the same.
On to an update. Mariska's white blood count, her Neupogen level especially dropped down to dangerous levels on Mondays labs. Because of this she now gets Neupogen shots at night. :) I'm glad they are TINY needles. I've still made Sam give them. Before her transplant she needed shots twice a day to thin her blood. So you would think this would be a walk in the park.. not so much. Still dislike needles. HA!
Because it was her neupogen level. (They are the fighters to help keep you healthy) means if she got sick she has nothing to fight off the sickness, sicking to think something simple could kill her. We stayed home from all the fun family events happening on Christmas eve and day. Wont lie it was so nice not having to run around and just enjoy being together.
Tonight she will have shot #5. The hope was the injections would boost her numbers up back to normal... This hasnt happened. She was at 200 (lower then this we wont talk about what happens, super low and high brings out the weird nastys) Her level today was 400. Improving but still low. under 500 she needs shots to boost it.
She'll get another 5 day treatment then labs to see what's happening. Everyone we run into at PCMC are shocked when we keep coming back twice sometimes 3times a week! we are too... we love all the staff but would rather miss them. =D
Keep her in your prayers. She feels healthy and acts pretty normal, its been hard to tell her she's in a scary places and cant do ANYTHING because of the risk of getting sick.
We're doing lots of infinity playing and puzzle making. Wont forget about eating nothing but junk from our loving friends.
Friday, December 20, 2013
She will finally get to come off her bag of meds. Slowly to make sure she stays stable but its in the plans. So happy. Here's to a new year and healthly year!
12 long hours. Waiting to pick up meds and we'll be on the road.
Her culinary look beautifully normal!! Im so happy I am about to cry witg this news.
her pressures are a little high for her but completely normal range.
later today we will find out if her heart shows rejection. Crossing fingers its clean.
Her White blood count is a little low, something to be watched. Her meds being a little to high can do that to her also. What does it mean if they are low? If she gets sick it will take her longer and more work to get over a sickness.
Waiting to go back into the pacu to see her
Mariska is in the cath lab right now. Her cath doctors said if her presssures look good they dont nedd to check her culinary arteries. Which would mean no groin site access! Home sooner today and a eaiser recovery. Today we left daddy home to work and watch Kamiah. Ha work and watch a 2 year old. We got to take grandma. :)
Thank you to everyone who fasted for our family sunday. It has helped keep us calm and organized.
Friday, December 13, 2013
Thursday, December 12, 2013
Oh how I hate the words rejection! Today or yesterday was a hard day. After she got labs her transplant team called and said her tacro level (anti rejection med, one of her two main) was half where it should be. They want her in clinic and maybe a cath also.
What!? Breath, breath!
Also the test i insisted they take came back positive for the flu parain oh forgor how to spell it. The bad one... She's going to take 10-14 days to recover!. My heart breaks for her. She felt little better yesterday. Only got sick a few times. The day before was bad...
Keep her and all of my family in your prayers. I'm really not sure what more I can take before needing meds or a padded room! Ha!
Tuesday, December 3, 2013
6am check in time is the worst part, but finding the results that day makes it all worth while. She went to sleep talking to the anesthesiologist about his dog and what tricks he can do, ha he can tell time. Breakfast time and dinner time. Was the happiest I've ever seen her for a cath. This one was smooth and she finished early. =) We played noisy games in recovery, until the kiddo next to us stopped crying then read books until she was ready to go down for clinic.
After the IV was pulled TX team told us not to pull it.. bad sign when that happens.
Mariska's heart chamber pressures are still extremely high, TX said over all some numbers went up others down so they called it the same as the last one. boo hiss. They debated about admitting her again for another round of IV steroids but decided she could just go back up on the dosage at home. She did go to school for a few days with her big 3m green mask on friday. but then missed all the next week (short week)
Her teacher sent home a bunch of homework and books to read and pass off. She was excited and read them all before we got home. She is starting to LOVE reading. I'm proud of her for her desire to learn.
Her cath showed rejection this time.
C 2.5 V2 ISHLT 1 PAMR 0
Still Cellular rejection. (if we had to pick a rejection to deal with it would be this one)
Last week she had labs. Her Cellcept (anti rejection drug she's always on) Didnt even show up in her blood. Now we're a bit worried. So rised that along with prograff her other main drug. Hoping they have finally become stable.
I looked at photos of her when school started she has changed so much! I love her chunky cheeks but wish it was back to normal again. I tell her every day I love her cheeks and I wanna squish them. She'll look at me smash them together then pinch them for me. HAHA love her.
She had clinic yesterday Her heart still looks great! but her neck you can still see the vain pulsing telling us her pressures are still scary high.
One the 16th she will have a full cath (the enter in two places, and has to lay flat for 4-6 hours after. They want to check her pulmary arties and make sure they are still doing ok. The worry about those if they become damaged it would mean another transplant sooner then later. SCARY stuff.
Mariska's weight has been intersting. When she got sick her low was 37lbs now she's almost 52lbs!
We had a great Thanksgiving with my parents brother and his girlfriend. It was small and not crazy like most years. There is not a day that goes by where I dont think of Mariska's heart donor and their family. Their gift has let me have so many wonderful mermories with my sweet girl. They are always close to my heart.
Thanks for all your payers, wishes and thoughts. They have helped calm sole and have peace in my heart.