For the last 24 hours, Amelia has had double digit platelet counts, hovering around 20. This is really great news since she has been between 0 and 10 for the last two weeks (yes...there was one read that was basically undetected). She has been pretty stable since yesterday afternoon at 21, 22 and 23. This is still far lower than it should be, but a lot higher than 0!!!
We have been celebrating New Year's Eve from our hospital. We are thinking about watching the ball fall as a family and then waking up to the Rose Parade in the morning. Kim has been staying here for the last few days while I have headed home each night (which is why posts have been random). The hospital is on RSV lock down and Wesley is not allowed in. We have been keeping him in our room with the curtains closed. It is not official yet, but it looks like the hospital is going to allow Wesley to stay, but he is going to be a prisoner to Amelia's room for the duration of our stay (we assume we will be out before the end of RSV)!!! When I head back to work on Thursday, this will make it so someone can be here with Amelia during the day.
We are trusting the new year will be wonderful and Amelia will quickly recover and we will set out to break our record of 19 months hospital free (excluding the colostomy fix which should be early in the year).
Tonight we are thankful Amelia seems to be holding on to her platelets, but there is still no answer for the low counts. We pray for answers in the new year and for an extended holiday from the hospital.
Blessings and Happy New Year from the Moody Family
Tuesday, December 31, 2013
Sunday, December 29, 2013
Had a Scare Today
Amelia was undergoing her 4th pheresis this morning. She was also getting several blood products, a result of the machine and the process and her low platelets. About half way through the pheresis, she started getting a little agitated, itchy and cranky. We were right with her and started trying to comfort her. She continued to escalate and broke out very quickly in a rash as her heart rate shot up. Suddenly, our room was full of nurses and doctors watching and ordering meds. We were able to keep her calm and with the meds they gave her, she started to calm down. It took about 30-45 minutes for her heart rate to slowly come back down and another few hours to get back to normal. It also took a few hours for the rash to resolve as well. Afterward, everyone said she reacted to one of the blood products being given. Needless to say, it was a little scary for Kim and I. We both know that once you get a bunch of nurses and doctors in your room with concerned faces, that is when you get worried.
Amelia was also oozing again from the IV ports on her leg. She had a dressing change to help clean it up. She was pretty out for most of the day following the pheresis. Tomorrow, she is heading down to IR to have the IV removed and possibly some stitches to close up the access point.
We continue to seek answers for Amelia. With no answers, we do not know how to treat Amelia for now.
Blessings
The Moody Family
Amelia was also oozing again from the IV ports on her leg. She had a dressing change to help clean it up. She was pretty out for most of the day following the pheresis. Tomorrow, she is heading down to IR to have the IV removed and possibly some stitches to close up the access point.
We continue to seek answers for Amelia. With no answers, we do not know how to treat Amelia for now.
Blessings
The Moody Family
Continuing Pheresis
Amelia has been pretty sedated through yesterday. We started to take the sedation medicine off and she was waking up yesterday afternoon. It was great to see her awake and talking again. However, she started to bleed again from the port sit with the pheresis IV line. We doped her up last night and changed the bandage. It was quite funny to watch her. She went from very upset with the nurses to laughing the smiling at them in about 15 seconds.
We are not really seeing any results from the pheresis yet. She is on her 4th process right now (or will be after the machine is finishing being prepped). For the most part, Amelia had a good night. She had to have her bandage changed twice in the last 12 hours because she has been oozing slightly from the site.
We are still looking for answers about her platelets. The doctors are at a loss right now. Tomorrow, after we finish up the pheresis, we are going to push to hold platelet transfusions as much as possible because Kim and I fell she does not respond to the platelets and we have tried so many things, we would like to see if Amelia responds to everything we have done.
We continue to pray for understand about what is causing her platelet counts to drop and for Amelia to start to respond to the things the docs are doing.
Blessings
The Moody Family
We are not really seeing any results from the pheresis yet. She is on her 4th process right now (or will be after the machine is finishing being prepped). For the most part, Amelia had a good night. She had to have her bandage changed twice in the last 12 hours because she has been oozing slightly from the site.
We are still looking for answers about her platelets. The doctors are at a loss right now. Tomorrow, after we finish up the pheresis, we are going to push to hold platelet transfusions as much as possible because Kim and I fell she does not respond to the platelets and we have tried so many things, we would like to see if Amelia responds to everything we have done.
We continue to pray for understand about what is causing her platelet counts to drop and for Amelia to start to respond to the things the docs are doing.
Blessings
The Moody Family
Friday, December 27, 2013
Round Two
Amelia made it through round two of her plasmaphersis. She did GREAT, but her platelets remain low for the time being. She had a good night last night and the cardiology team on the floor were able to stop the bleeding through the access ports in her leg. This evening, she sat up for a while eating some Cheerios and watching some movies. She was interacting with Wesley...or should I say getting upset when he tries to steal her blanket.
Tonight, we are really asking for prayers. The docs have let us know they are really starting to reach out to other cardiology and hematology centers in the country to seek help in treating Amelia. With lab work not returning and problems, no viruses, no genetic causes for what we are seeing, the doctors are starting to run out of things to try.
Blessings
The Moody Family
Tonight, we are really asking for prayers. The docs have let us know they are really starting to reach out to other cardiology and hematology centers in the country to seek help in treating Amelia. With lab work not returning and problems, no viruses, no genetic causes for what we are seeing, the doctors are starting to run out of things to try.
Blessings
The Moody Family
Thursday, December 26, 2013
Finally Processing
Not sure if processing is the correct term, but the Plasmapheresis is finally going. We had to wait for blood to prime the machine, but we are finally up and running. The entire process should take just over two hours. She is still oozing slightly from the cath site, but that was expected.
Plasmapheresis
Amelia is currently getting connected to machine to complete something called Plasmapheresis. This is a process to basically wash her blood. Some tests have returned a relative high antigen (I think) against her platelets causing her low blood counts. This process will clean out all of products from her blood. If all goes well, she will have this done every day for the next five days. We should see improvements in her blood counts in about three days if the antigen is truly what is causing her to loose her blood platelets.
She went to IR this morning to have the catheter needed for the treatment placed in her leg. She has been bleeding from the site for quite a while now, though it has been controlled by the nurses with pressure on the site.
There are some risks with this process, the biggest of which is bleeding. We pray for the bleeding to remain minimal and controlled and for this process to bring results for Amelia.
Blessings
The Moody's
She went to IR this morning to have the catheter needed for the treatment placed in her leg. She has been bleeding from the site for quite a while now, though it has been controlled by the nurses with pressure on the site.
There are some risks with this process, the biggest of which is bleeding. We pray for the bleeding to remain minimal and controlled and for this process to bring results for Amelia.
Blessings
The Moody's
Wednesday, December 25, 2013
Our Christmas at PCH
We had a wonderful day celebrating the Birth of Christ. Amelia enjoyed some presents and we just enjoyed the holiday as a family.
She continues to have very low blood counts, so she is getting another transfusion this evening. We think she is headed down to start a process that will basically wash her blood from some of the stuff that is causing her to consume her blood products. We are not totally sure about that yet, with it being the holiday, there are not many people here to make and confirm a schedule. Will let you know tomorrow.
Tonight, we still seek answers for the cause of her low blood counts. We pray the docs will find something they can treat.
Blessings
The Moody's
She continues to have very low blood counts, so she is getting another transfusion this evening. We think she is headed down to start a process that will basically wash her blood from some of the stuff that is causing her to consume her blood products. We are not totally sure about that yet, with it being the holiday, there are not many people here to make and confirm a schedule. Will let you know tomorrow.
Tonight, we still seek answers for the cause of her low blood counts. We pray the docs will find something they can treat.
Blessings
The Moody's
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