Friday, July 31, 2009
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
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
Sunday, July 5, 2009
Wet 'N Wild!
Just had to share these fun summer photos with you!
Joseph is saying, "Come on in, the water is fine!"
Abby practices writing her name in the sand...she is getting ready for kindergarten!
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!
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
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