Day + 28 +29
I can’t believe we are one day away from day 30.
Tuesday will be Kaedyn’s last day at Shands for this current admission. In the future there will probably be 24 hour admissions for fevers, but nothing in comparison to the last 4 months.
I’m so excited about staying at Nan Nan’s house, and only being 5 minutes from our house. I hardly sleep at night thinking about having some normalcy in our life.
Kaedyn is doing well. He is eating about 1/2 of what he ate before he relapsed. It is common for children not to eat sometimes for several months following a transplant. His Dr. said he needs to drink 35-40 ounces of liquids a day. That is about 3 bottles of water, and is difficult for any 3 year old. It is important that he have drinks with calories. Presently he is drinking about one bottle of water which is 16.9 ounces, a small apple juice and some soda. Kaedyn is not into juice and thinks anything beginning with the word Pedi is gross. I’ve always pushed water and allowed a few sips of soda, but calories are essential now. We are trying whatever he will tolerate other than water.
If he isn’t drinking at least 35 oz. a day a feeding tube will be placed Tuesday during his other procedures. We are trying our hardest to reach the goal tonight. Please pray these next couple of days Kaedyn’s fluid intake will increase, and it won’t be such a battle.
During these 4 months, Kaedyn has received many boxes of toys and so many get well cards. I really appreciate all of your love for my angel.
Please continue to pray for my angel to continue to impress the wonderful staff here at Shands. And for all of our buddies we have made along the way.
Day + 28 +29
Today was a great day. We left the hospital! Plus Pap came to visit. Kaedyn couldn’t have been happier.
Kaedyn continues to do well. His counts are staying still staying around 1500. He has gone 6 days without a blood product and seems to be holding steady. If only he would drink enough. He is trying some of his old favorite foods so I know his appetite will come back. My sister and I devised a plan to encourage him to drink more. He did better being out of the hospital that’s for sure.
When we were playing at the Ronald McDonald House, he twisted his angle or “nankle” as Kaedyn calls it. His little bones and legs are so weak. My dad could barely hold it together because you can tell how weak and fragile his little body is. I am trying to remain strong and remember this too shall pass. For us Momcoloigsts we learn to be grateful that our child is alive because so many die of their diseases. As long as Kaedyn remains cancer free, he will someday soon be able to live basically a normal life.
I love hearing and knowing that we are one of the easy patients now.
I have to say that we are blessed to not have much to report other than Kaedyn’s wonderful progress.
He is eating!! Not much but a little. And he is drinking better. According to the team, he is not even close to being ready to go home. He needs to be drinking a liter or 2 bottles of water a day. He is not even finishing a half of a bottle at this point. Most 3 year olds would never drink that much so this is very difficult.
We have a’lot to work on for the next 6 days. Every day he makes a’lot of progress so I’m proud.
He is feeling very well for all he has endured, I am amazed at my 3 year old’s strength. He is the most amazing person I have ever seen. I couldn’t be any prouder.
Please continue to pray for Kaedyn’s appetite and for him to be a thirsty little guy. Also for his GVHD to stay under control.
And for all his little buddies here at Shands.
Day +23 & +24
Fortunately for us, I’m combining posts and keeping them short and sweet.
We are continuing to see minor side effects, like peeling of the skin from the chemo and radiation. Kaedyn has a tiny rash that comes and goes. I am typically the only one that notices it because it is visible for only a few minutes. The nurse on day shift was able to document it is in fact there. His Doctor began a steroid cream to keep the Graft vs. Host rash under control.
He is off almost all meds since he is taking them orally. I must brag. I came up with a way to hide his medications in a little shake. It is a small medicine cup with 3 medications mixed in a little bit of chocolate shake. We call it his super hero shake and all superheroes need to drink this shake to be strong, and to get the bad guys. He isn’t thrilled about it, but this works better than taking the medications in syringes.
This photo reflects one brain on the medicine pole. He has 1 cord instead of 3 to the central line. Thanks for prayers and progress.
The Doctor came in today, looked in his mouth and looked at his rash. She informed me about the decrease in medication and said, well that’s it, I have nothing concerning to me. I love it!
We are supposed to go home next Tuesday after a bone marrow biopsy and central line removal. If Kaedyn is eating, I’m going to ask if the procedures can be done on Friday, day +29.
So pray, pray Kaedyn eats and he continues to have minimal side effects!
And of course to stay cancer free forever!
Day 21 +22
It’s continuing to get brighter and happier in room 4266. Uncle Jesse came back to visit because Kaedyn’s counts are rising and obviously Uncle Jesse is healthy. Kaedyn had a great time playing with him since he has only seen 3 faces day in and out with daddy on the weekends.
My sweet boy is wore out and asleep on me at 8:30. It’s so hard to predict his sleep here. Last night he went to bed at 1:00 Am and tonight it’s 8:00 PM.
The little guy ate 2 bites of cheese and 1 bite of a Hershey bar. Barely anything but it was a start! He promised to eat a breadstick from Olive Garden but managed to fall asleep before Berber got back with the food. I’m not sure if that planned or not.
In good news Kaedyn’s Dr. and Nurse Practitioner are only coming by 1 a day now. Kaedyn is so super steady right now. We talk about drinking, eating, medicine and the small rash on his body and they are out the door. Dr. E loves Kaedyn so much and he always ignores her because she tells him that he needs to eat, drink and take medicine to go home. I told him he needs to be nice to her because she loves you. Kaedyn’s response, “I’ll give her a big hug when she sends me home”. I love my sweet yet stubborn boy.
Still need those prayers for Kaedyn’s appetite and for his GVHD to stay mild.
Thank you for all your love and care. We appreciate all the prayers, wonderful messages through FB or the blog. I also dearly love all the Get Well cards we receive daily. The poor hospital delivery guy makes multiple trips to our door daily. He said he has never seen a patient receive so much stuff! Thank you <3 I love you all
Saturday the 13th
Car wash at Harvest Market Deli and Produce in Ocala
3751 Se 36th Ave Ocala
Car wash is $10 and with that you will receive a $1 off coupon any sandwich and a free drink inside the market.
Ayden and Kaedyn attire will be for sale there!
Come and support our cancer fighting buddies!!!
Kaedyn’s ANC was high enough for him to go off the floor and take a walk outside today. He was like a little monkey climbing on things. His platelets are very low so he will need a transfusion tonight. That didn’t slow him down at all, but Mommy and NanNan held on to him for dear life.
He has mastered 2/3 of his goals which are taking medicine and drinking. However, Kaedyn has no appetite. I show him his favorite foods and he doesn’t even really look at them. As of tomorrow we have 9 days to get him eating. If he doesn’t he may not be able to go home or he may go home with a feeding tube. A feeding tube is not the end of the world, but I will try my hardest to prevent that from happening. Please pray for his appetite to come back!!