Monday Evening Update

Dr. Ringewald came by this evening and said Joseph looks great. He also said that his 3 beat run of VTach (irregular heart rhythm)was probably because his heart is a little sensitive right now with everything that's going on and it's common with what he's experienced and not to worry. I admit, the word VTach brings back feelings of panic and anxiety and Dr. Ringewald figured that freaked us out a little, for good reason. The next biopsy is still scheduled for Thursday. Joseph is still receiving his Thymoglobulin right now and is getting ready to take his night time meds. The good news is he recently learned to take pills so it's not half as hard for him to get down all the meds like it was two years ago! :) Abby has enjoyed visiting her JoJo tonight and has been working really hard to make cards for him so he'll get better really quickly. She's really worried about him so we're trying to let her spend plenty of time with him to ease her fears. It seems to be helping. Thank you for praying for us and sending us messages. They lift our spirits when we are feeling down or scared. Love you all!
Heart Hugs,
Angela, Stephen, Joseph, and Abigail

Monday Morning Update

Good morning all. Thought I'd post a quick update earlier in the day this time...sorry I waited so long yesterday. The hospital can be a very busy place! I know you may be worried about our little man. Joseph developed a fever last night and didn't feel good. But, the good news is his fever is already gone and now he feels fine. :) We all think it was just an adverse reaction to the Thymoglobulin. It didn't last long, thank goodness. He had one 3 beat run of PVC's, which means a little irregular heartbeat. But the good news is it only happened once and they will do an EKG this morning.

Did I tell you that when Stephen was driving to meet us in Charleston Thursday night he saw a rainbow? We both think that was a good sign of things to come. :)

Joseph's main complaint about the hospital is not how he feels or that he is scared. Nope, he's just bored. He is decorating the big window in his room with the solar system. He's making it out of Bendaroose (As Seen on TV). :) I told him we'd better find a science book, because it's been forever since I've had to align the solar system. Between Google and Nurse Caroline.......we'll get the project done. He lives for the time that the Atrium is open. So, for now we are watching the clock waiting for the doors to swing open and let us in! :) I'll post later in the day to give you an update from the docs.

We don't understand why these things happen, but this Bible verse brings us peace.
And we know that all things work together for good to those who love God, to those who are the called according to His purpose. (Rom 8.28)

Heart Hugs,
Angela, Stephen, Joseph, and Abigail

Hanging In There

Joseph is hanging in there! He feels good today and we are so thankful for that. He just started his second round of Thymoglobulin to wipe out his T Cells. So far, that is going well and he is not having any reactions. We spoke to the doctors and they are pleased with what they see so far. The next biopsy is scheduled for Thursday. That will help us know if the treatment is working. Joseph just informed me to write that he feels great, not good! So there you have it from the patient himself! :)

Thank you for your prayers. We feel your love and support.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Love to you all!
Angela, Stephen, Joseph, and Abigail

Watching & Waiting

Joseph has had a better day. He started the immunosupressant regimen and has had no side effects, which is great. Now we just watch and wait. He was pretty comfortable all day and the pain in his side has decreased tremendously since relieving his body of so much fluid. He is once again getting spoiled here by the sweet nurses and wonderful doctors. He had some very special visitors today and that lifted his spirits quite a bit! Abby was really excited to see him. She bought him a special present and brought it in proudly to her big brother. She gave him a big hug and told him she hopes he gets better soon. Joseph was able to put on a mask and they rolled him into the atrium to play for a while. The atrium is wonderful and is a "safe zone" where doctors are not allowed! He and Stephen built a fort out of wooden blocks, played X- Box 360, and made a really cute craft project out of popsicle sticks and cotton balls that he wants to hang in his room. He is so funny, he said to us tonight that he doesn't understand why he's still in the hospital since his side doesn't hurt anymore! :) If it was only that simple! He is ready to go home and so are we. But, we'll stay as long as it takes to get him better.

We want to thank everyone for their prayers, and we hope you continue to pray that his treatment will stop the rejection so Joseph can be restored to full health. We want our vibrant little boy back at home, riding his bike around the neighborhood, and chasing his little sister until she screams.

... For God has not given us the spirit of fear; but of power, and of love, and of a sound mind.
2 Timothy1:7

Cath Update

This is Hayley, one of Angela's friends. She asked me to post an update about Joseph, so here goes. The good news is that the heart function and pressures in Joseph's heart are better than the doctors thought. They were expecting them to be much worse and were "pleasantly surprised" with the results. The fluid around his liver has also decreased, which is another good thing. The not-so-good news is that the cath biopsy report came back with a high rejection levels Rejection levels are measured from 0-4 with 0 being no rejection and 4 being total rejection. The increments are 0, 1a, 1b, 2a, 2b, 3a, 3b, 4. Joseph's level was 3b. The rejection is still treatable with medicine. They have started him on another strong medicine that will totally wipe out his immune system, so that his body will quit fighting against the transplanted heart. This will make Joseph more susceptible to infections and he will have to be isolated for awhile. It is all just a waiting game and Angela said that she will know more details later. Please continue to pray for Joseph to respond to the medicines without any side effects. Also, remember to keep Angela, Stephen and Abby in your prayers.

A bump In The Road

So.........we hit a bump in the road.

We had a few concerns yesterday about Joseph. He was tired, had a pain in his side, and diarrhea. He hadn't been feeling well for a couple of days. Abby and I took him to the doctor, thinking it was possible appendicitis or something. We called transplant (to be on the safe side) to let them know of our concerns. They wanted to be safe and take a look at him, so on a moment's notice, we were headed for Charleston to get him checked out. Unexpectedly, we were told that Joseph's liver was enlarged and they expected that it might be his heart that was sick (the R word we never wanted to hear........Rejection). They did an echocardiagram and an EKG, then an x-ray. They confirmed it was his heart and we needed to admit him to the PCICU to start fighting the rejection. The plan is to be aggressive to stop the rejection or damage that can occur or has occurred. Dr. Ringewald said to expect at least a 3-5 day stay in the hospital, then steroid treatment at home for a month or two if all goes well. He was 1st case in the cath lab this morning. He is out of the cath and resting comfortably at this time.

11:00 AM

Just spoke with Dr. Ringewald.... Joseph's heart cath this morning was better than he expected. His initial procedure showed that his pressures are a little worse than his last cath (in April), but better than he was expecting. His blood flow is showing a little worse than the last cath, but better than he was expecting. After a night of Lasix drip Joseph's liver is almost back to normal size. :) They are hoping that the Milrinone they give to help his heart squeeze will no longer be needed after a day or two. :) We will get biopsy results back this afternoon and will know more about what is going on inside his precious heart.

This is the plan for now: Thymoglobulin (immunosuppressant), steroid drip, Lasix (to rid him of fluid), Milrinone (to help the heart squeeze), Prograf, and other usual supplements. After we get biopsy results this afternoon we will monitor and adjust his treatment as needed.

We are feeling hopeful that we caught this in time. Thank God we came in yesterday when we did! One more day could have made a HUGE difference!

Hopefully, now that we are here and he is being treated with such knowledge, skill, and care...they will be able to reverse this condition and restore him to full health.

Please keep the prayers coming. It is so uplifting to know that people are praying for our wonderful little boy. He is such a blessing to us. We are always learning and growing in our faith because he is our little reminder of all that is good in this world and no matter where we are or what we are doing, God is right here with us every step of the way.

Love to All,
Angela, Stephen, Joseph, and Abigail

Wet 'N Wild!

Just had to share these fun summer photos with you!

Joseph and Abby are taking the plunge! They can both swim now! Things just got a lot more interesting in our pool. It's one crazy game, contest, or challenge after another!

Nothing is as fun as a day at the beach!

Joseph is saying, "Come on in, the water is fine!"
Abby practices writing her name in the sand...she is getting ready for kindergarten!

Hope you all had a Happy 4th of July! We spent the day in the pool, grilling, and shooting fireworks! It was a great day for us! We were happy to celebrate the freedom to do anything we want! Joseph's good health continues and we are so thankful for these happy times! Love to you all!

Until next time,

Angela, Stephen, Joseph, and Abigail