And then there were 5!

WOW. Another little boy got a heart at 4 am this morning. That puts the count at 14 for this year. I heard they only did 4 heart transplants all of last year! I also read that a study was done and the survival rate of transplant patients is greatly increased in facilities that perform 14+ heart transplants per year!! I think that is a good sign. :)

Joshua is doing pretty well. They stopped the antibiotics and started him on Pedialyte. It is up to 15 cc's per hour. They will continue to increase the amount and start him on half strength Monogen tomorrow. There is still some banter on the rate and dosage of the formula. Maybe we will have a better idea tomorrow. He was pretty smiley today and we played for a while. Joshua talked to Trevor on the phone today too. Usually he smiles and stares at the phone but as soon as he heard Trevor's voice he was yabbering away. :) It was awesome. I love the bond that the two of these boys have. They don't get to spend much time together but Joshua knows that they are brothers and friends.

Today they switch residents (again) so now we will have to break in a new team again. This is a monthly task that I don't really enjoy.

I hope that you all are doing well. Blessings,
Leah

I can't believe how big he is getting. This is his "new" smile where he gets a big grin and shows his teeth.

And then there were 6.....

Little Miss Shayla is now PINK! And satting at a 100%. Something that us heart mommies generally expect NOT to see! :)
Her mom says she is doing great and looks really well. YEAH!!
There are now 6 little people still waiting to get hearts. Seattle Children's has performed 13 heart transplants this year, thanks to some very generous parents that chose to say YES and donate their child's organs. What a miraculous gift to be able to give a chance at life for another child when your own circumstances seem to be at their very worst. It is amazing to see God's work and timing first hand.
Blessings,
Leah

Shayla Wilson

UPDATE: Looks like Shayla won't be going into surgery until after midnight. It is scheduled to take approx 6 1/2 hours. I will update in the morning.

Goodmorning. I just received a call from Jamie, Shayla's mom. They just received a call for a donor angel heart for their daughter. They have been waiting since May. The surgery will be at 12:30 pst. Please pray for Shayla, her family and the Transplant team as this all unfolds. Also, with this awesome gift comes a sadness that I hope to never know. Please be in prayer for comfort and peace for the family that is grieving the loss of their child.I pray that they know the power of the gift they have given by saying yes. I will post an update as I know more.

Thurday Dec 4th

So, I wouldn't classify myself as an emotional eater. BUT~I have to say that I think they should only deliver transplant removals and suspensions with chocolate!!

Joshua is doing a little better today. He has been smiling when he wakes up. He is still sleeping a lot but he looks a little better today. The antibiotics and holding his feeds seem to have helped. They have decided against the CT Scan. The plan, as of this minute, is 7 days on antibiotics and no food. The x-ray this morning didn't show any air in the intestinal wall. It seems that we caught it really early. WHEW! There is still question on whether we hold the immune suppression this coming Monday or not. I will find out more about that later.
I also plan on taking some pictures and posting them. :) I dug my camera out of the truck.

My dad is on his way home. He left this morning. Please pray for safe travel for him as he ventures home.

Still day 187

Ok. So now I have information.
They are pretty concerned about his gut. They will stop feeding him and start him on TPN. They have started him on Vancomycin and Zosyn (antibiotics) as well as Flagyl (anti-fungal) and will watch him very closely. The doctors feel that this was caught early enough that the risk of perforation is low. They are also going to place a NG tube into his stomach and set it to suction. He will have another abdominal x-ray tomorrow. It sounds like this is going to be a 10-14 day course. He could have a harder time fighting this due to the IVIG and Rituximab but they don't feel that it will be a huge deal. They are not sure if he will resume treatment next week or not. This was his hold week.
Until this is cleared up, he will be temporarily removed from the transplant list.

Day 187

Wow. It is hard to believe.....We have now been here more than 6 months.

Joshua has had a rough couple days. He is so cranky and uncomfortable. They did another abdominal x-ray today and think that he may have some kind of bowel infection. I am waiting to hear what the official word is. I will update as I know. Please pray that this is nothing. Having an infection will temporarily remove him from the transplant list.

December 1st

WOW! I can't believe that we are into December already!! That is just nuts.
I wanted to let you all know that I am back in Seattle as of this morning.... is you call 2 am morning. :)
Joshua welcomed me last night by peeing all over my leg when I changed him. BOYS. He has had a great morning and has been so full of smiles. When I held him this morning he just pushed himself into my me as hard as he could. We cuddled!! He is napping now.
I will get some updated pics up tonight.
Please keep the Wilson family in your prayers. They are having a care conference regarding Shayla today....right now, actually. I have not had a chance to see Mike or Jamie since I have been back. It seems that she had a real rough week. Please pray for the family and wisdom of the drs and staff who are making decisions about her future.
Blessings,
Leah