Oh boy....er....oh boys!

It has been a real rough couple days. Sorry for the late updates.
First we will start with Mr. Joshua. He had a really good day on Friday. He was happy and played for a total of 3 hours in his high chair. Was loving his new Christmas toys, smiling and laughing. It was a good day.
Friday evening. I have a conversation with the transplant coordinator that really was a shock to me. He was relisted because he was off the list for a couple days and the realization that a heart could come at any minute and I would have to hand my baby off to another surgery was real tough to deal with. As it is a happy occasion it is EXTREMELY scary given all the circumstances.
Saturday morning. Joshua was obviously not himself. He didn't want to play, be held or messed with. He had also had a few really explosive diapers over the course of a couple days. (You know the ones where you have to shake your head and wonder how on earth the poo got in a whole 2 foot radius of the diaper when the baby is quietly sleeping!) Well as the day went on he became more irritable. I left for a while to be with the other kids and came back about 11 pm. He was trying so hard to go to sleep. He didn't sleep Friday night and napped very little through the day. Every time he would just get to sleep he would wake up screaming. Not the screaming because I am mad and want you but a real sad wimper like scream. He was surely in pain. After a while I noticed he was burning up. I took a rectal temp and it was 38.8 (101.8). Luckily my resident friend just happened to be covering Team 3 so I went out and talked to her and let her know that Joshua was really hot. (Joshua had a nurse who has maybe had him once several months ago. Not one that knows him well. She had a really busy night between Joshua and his partner who was causing major scares also!) The nurse came in and took an under arm temp (which is a waste with Joshua because he sleeps with his arms up in the air so he is always much cooler that way then the other.) It was only 37.0 so she told the Dr's everything was fine. About a 1/2 later she came in to check on him and did a rectal. She came up with 37.5 (99.5.....it needs to be 38.5 to be recognized as a fever and get Tylenol) They gave him some Benadryl to help him sleep. He was so miserable. After about 1/2 I was at wits end. I had them call the Dr again and she came in. She decided that he did look uncomfortable, so we should give him some extra Morphine for the pain since he couldn't have Tylenol because the nurse got a different temp than I did. At 2:00 am he was still screaming. He hadn't slept and his skin was HOT. I insisted that the nurse take his temp. She choose again, under the the arm. His under the arm temp....with it in the air was 40.8 (105.4!)! I would bet his rectal was a bit higher. So....at that point....he got some Tylenol. With that little concoction of meds he managed to sleep for an hour. The Rapid Response Team came in several times. His heart rate was 229, his temp was not going down and he was miserable. They ended up putting him on a cooling blanket and packing him with ICE while the Rapid Response Team evaluated him. Reed, a Fellow in the ICU, decided he needed to be admitted. And so at 7:20 am (and damn near frozen into shock) Joshua was admitted. He was listless pretty unresponsive. Come to find out looks like all the poop was getting counted as mixed diapers and he was actually not peeing. He had become pretty dehydrated and his sodium level was high 160's when the high acceptable level is 145. They started free water replacement so for every once of poop he got an ounce of water. His sodium did come down. They had to put him on Dopamine to increase his blood pressure so that he could get flow to his kidneys. Yesterday was a lot of fine tuning. Today he is off the Dopamine and peeing very well. He hasn't had any diarrhea but he still has a fever. His heart rate has come down. He was actually asleep last night in the 120's.....usually he is in the 140's. To top it all off...I am sure that he is breaking more teeth.
It is unclear at this point how long we will be in the ICU. It is nice to see all the familiar faces and be among friends again. I was hoping that it wouldn't happen until his new heart birthday.
And on the home front.....Mr Trevor. Before he came here had gone to the Dr and had a sinus infection. He did about 20 days of 2 different antibiotics and was better when he came here. He would have an occasional cough when we went out into the cold but nothing that I would consider serious. Saturday night he told me his ear hurt. I gave him some Tylenol and told him to let me know how it was the next morning. My dad said he complained a little but noting too much. Sunday evening about 5 Shyla called and said that Trevor had just had diarrhea and his ear hurt. They gave him some Tylenol and I went in search mode to see where I could take him to be seen besides the germy ER. I found out about the after hours clinic and had my dad bring Trevor down. We met with the Dr, she listened to him and asked if he had been coughing. A little...and I mean little. (Before when he was sick he coughed until he puked!) Well that surprised her since he has PNEUMONIA!! UGH. Then she proceeds to look in his ear and gasp. She said that must hurt so bad. Trevor says nope...the other one hurts. She looks in the other ear and makes another gasping sound. On a scale of 1-10 with 10 being the worst they could be.....he was a 9 in BOTH ears! She prescribed a special breathing treatment and a high dose antibiotic. One would think that the hospital pharmacy would carry what the hospital prescribes but that isn't so. We were the last appointment for that Dr and she left right away so I had to come pull favors in the ICU to get something different. By the time we got it all straightened out the pharmacy was closed. I brought in the new prescription today it was only going to take 2 hours to fill! UGH UGH UGH.
Please pray that both these boys get better soon.
Love and blessings,
Leah

Merry Christmas!!

I hope you all had a very wonderful Christmas. Ours was busy but wonderful.
The kids have been here for a week and I took vacation time from work so I haven't been on the computer much. Sorry for the lack of updates.
Joshua is doing pretty well. He was removed from the transplant list Wednesday and Thursday. He should be made active again today. He had IVIG on Tuesday and ran a really high fever of 103.5 for a couple days afterwards. They ran all tests on him again and he did not grow anything. His white blood cell count was never elevated so doubtful that it was an infection. (Which we are very thankful for.)
My parents and Matthew came here for Christmas. It was a very long drive for them because of the snow. They averaged about 35-40 miles an hour the whole drive. The kids were so great about waiting to open gifts until they got here. We had a wonderful dinner at the Ronald McDonald house on Christmas Eve. We were supposed to go an an Argossy Cruise but it was cancelled because the bus drivers refused to take us. WHAT A BUMMER!! We stayed at the house and it was great too. They decorated cookies and Santa came. He visited us downstairs while his helpers delivered gifts to our room. It was such a wonderful surprise. The kids LOVED it. We had a super brunch in the morning. It was at 8:30 am and I hardly call that brunch! An early morning person, I am not. We had a nice Christmas dinner at the house last night too.
I brought some gifts over to Joshua after we opened gifts and played at the house for a bit. He really enjoyed the wrapping paper. I will post some pictures of him later.
I hope that you all enjoyed the day with your friends and family celebrating the birth of our Father, Jesus Christ.
Blessings,
Leah and Family

Monday

Hello friends,

Just a quick update to let you know that Joshua continues to do well. I didn't come to the hospital this weekend because I woke up with a sore throat on Saturday. I didn't want to make hin sick if I was catching something. He was so happy and playful when I got here this morning. He was playing with a volunteer and was loving it. He was jabbering a lot today. Joshua and I had a fun time dancing and singing to a little Goofyfooted today. It was awesome!

A family that that left the hospital today gave him a HUGE dump truck balloon today when they left. He is really enjoying it. I am so glad to see him feeling better. :)

We got a special visit today from Dr Hardy and his daughter. It was so nice to see him. He is still surpised how well he looks! I can't wait until we are seeing him in his own office in MISSOULA!

Joshua should be made active on the list again in the next day or two.

Blessings,

Leah

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