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
Tuesday, December 24, 2013
Merry Christmas
Merry Christmas from Wesley, Amelia, Kim and Brian...Enjoying our Christmas from our hospital room at Phoenix Children's Hospital.
Please remember, in the midst of the presents, football and dinner to hug and cherish your family and your Savior this Christmas!!! In all the hustle and bustle of the season, after it all ends, the things we will remember and cherish is the time we are able to spend with our family thanking God for the sacrifice of His Son so we could spend eternity with Him.
Bless God!!!
The Moody's
PS: Nothing substantial to report from Amelia. Her blood counts remain low. We are looking at a few options in the coming days. Will detail tomorrow.
 |
| The Moody Family with our Christmas Tree at PCH for 2013!!! |
Please remember, in the midst of the presents, football and dinner to hug and cherish your family and your Savior this Christmas!!! In all the hustle and bustle of the season, after it all ends, the things we will remember and cherish is the time we are able to spend with our family thanking God for the sacrifice of His Son so we could spend eternity with Him.
Bless God!!!
The Moody's
PS: Nothing substantial to report from Amelia. Her blood counts remain low. We are looking at a few options in the coming days. Will detail tomorrow.
Monday, December 23, 2013
Looking At A New Medice Regiment
It seems Amelia's rejection medication can cause her body to consume blood products. So, we are likely going to change her rejection meds. We are still waiting for her CMV test from the bone marrow to come back, but the docs think it will be negative.
Sunday, December 22, 2013
More Blood
No change for Amelia today, but she is getting more blood transfusions. She was up walking around, but she was cranky and not very social today on her walks. Apparently, she is not only low platelets, but also low on her red blood counts. So...another transfusion this evening.
We pray tonight about the results of the CMV (some kind of virus) tests on her bone marrow, which should come either tomorrow or Tuesday. If it is negative, there is no real answer for her low blood counts and we are going to try switching up her rejection meds. That leads to a set of questions and concerns. On the other hand, if it is positive, we are going to have to treat for that and that means more immuno suppression. So, neither is the best, but we have a plan and path for both.
Blessings
The Moody's
We pray tonight about the results of the CMV (some kind of virus) tests on her bone marrow, which should come either tomorrow or Tuesday. If it is negative, there is no real answer for her low blood counts and we are going to try switching up her rejection meds. That leads to a set of questions and concerns. On the other hand, if it is positive, we are going to have to treat for that and that means more immuno suppression. So, neither is the best, but we have a plan and path for both.
Blessings
The Moody's
Saturday, December 21, 2013
Going to Change Meds
Our cardio team today decided it might be time to consider changing her rejection meds, thinking her blood may might be reacting to the rejection meds. It is not common, but does happen. We are going to wait for one more test before making the switch, which should happen early next week. She has received 4 platelet transfusions in the last 48 hours, so we are really hoping to see a change soon. Other than the blood, Amelia is doing well. She is gaining weight (probably because they are pumping lots of calories through her NG) and slowly starting to snake a little.
We pray mixing up the meds will help her blood counts. Unfortunately, we will not know for a few days.
Blessings
The Moody's
We pray mixing up the meds will help her blood counts. Unfortunately, we will not know for a few days.
Blessings
The Moody's
Friday, December 20, 2013
Negative Again On Bone Marrow Biopsy
We spoke with the hematologist (blood) doc today and he said the bone marrow is producing cells the way it should. This is good news because that rules out some problems, but again bad because we still do not know what is causing Amelia's problems. No other tests have returned anything signs of infections, viruses or problems either.
Amelia had a good day today. We took several walks and she was up sitting on the couch coloring often. She is still getting blood product transfusions (platelets as I type) as her blood counts continue to trend down.
We still pray for answers tonight.
Blessings
The Moody's
Amelia had a good day today. We took several walks and she was up sitting on the couch coloring often. She is still getting blood product transfusions (platelets as I type) as her blood counts continue to trend down.
We still pray for answers tonight.
Blessings
The Moody's
Thursday, December 19, 2013
Delayed Post
Amelia came back from her IR visit with a PICC and the Marrow biopsy. We have not heard back about the biopsy. We should have initial results today.
Yesterday, we also started medicine designed to boost her white blood counts. Our blood doc has been recommending this and we were probably going to start this outpatient. However, now that we are in the hospital with everything going on, we decided to start the medication.
Amelia continues to be in some pain we think is from sores in her month and possible throat. We have been working to stay on top of her pain management as much as possible.
The doctors have been slow exhausting the big and obvious causes of Amelia's problems. We have started to think about what else could be causing Amelia's problems. On of the options is her medicines. We have been adjusting medicines to see how she reacts.
Our pray is for answers. We need to know what is wrong so we can decide how to react.
Blessings
The Moody's
PS: I forgot to mention the reason for the delay. Kim found some road debris on her way home last night. She returned to the hospital so we could decide if we needed to have a police report. Looks like minor damage on the front of the car - just a hole in the plastic bumper - no structural damage.
Yesterday, we also started medicine designed to boost her white blood counts. Our blood doc has been recommending this and we were probably going to start this outpatient. However, now that we are in the hospital with everything going on, we decided to start the medication.
Amelia continues to be in some pain we think is from sores in her month and possible throat. We have been working to stay on top of her pain management as much as possible.
The doctors have been slow exhausting the big and obvious causes of Amelia's problems. We have started to think about what else could be causing Amelia's problems. On of the options is her medicines. We have been adjusting medicines to see how she reacts.
Our pray is for answers. We need to know what is wrong so we can decide how to react.
Blessings
The Moody's
PS: I forgot to mention the reason for the delay. Kim found some road debris on her way home last night. She returned to the hospital so we could decide if we needed to have a police report. Looks like minor damage on the front of the car - just a hole in the plastic bumper - no structural damage.
Wednesday, December 18, 2013
Down For PICC and Marrow Biospey
Walked Amelia down for the procedure. She should be back in an hour or two.
Tuesday, December 17, 2013
Good New - Bad News
The good news we had today was the mouth swabs returned nothing positive in her mouth. The bad news is with no positive culture, we do not know why Amelia is not feeling well. We have had a number of consults again. It looks like tomorrow will be a busy day for Amelia. She will go down to IR (something radiology) to have a PICC line inserted, yet again, and another bone biopsy to ensure the bone marrow is producing the blood products she needs. Most of her blood counts took a dive since check in (beginning to wonder if just a night at the hospital does that all by itself). So, all in all, this was a rough day.
We are praying tonight for revelation. We need to know what is causing Amelia to be here. What is bringing and keeping her blood counts low and why is she in pain.
Blessings
The Moody's
We are praying tonight for revelation. We need to know what is causing Amelia to be here. What is bringing and keeping her blood counts low and why is she in pain.
Blessings
The Moody's
Monday, December 16, 2013
In Pain
Amelia had an OK day today. She seems to be in pain, we assume from her mouth. She got some pain medicine and perked up for a while today, even interacted with Wesley. As the meds wore off, she started to get cranky again. She will be getting another transfusion this evening. She had a fever today as well. If the heart rate yesterday convinced Kim and I to bring her in the hospital, the fever today would have!!! No definite word on what is going on yet, so for now we wait.
We pray for rest and comfort tonight. We also pray the docs can figure out what is going on.
Blessings
The Moody's
We pray for rest and comfort tonight. We also pray the docs can figure out what is going on.
Blessings
The Moody's
Sunday, December 15, 2013
Back In The Hospital
For the last week, Amelia has been slowly going the wrong way. After our clinical appointment on Monday, she had a blood transfusion on Tuesday (we posted that). We expected her to get better, but she did not really bounce back like we though she should. We asked to have lab work on Thursday, and they did a follow up on Friday. She had slightly elevated kidney function again...we assume it was because she had slowed her eating and drinking again. We put an NG tube in and flush her with fluid and calories. Friday night, her heart rate was elevated, AGAIN (!!!) and even higher on Saturday night. She was also cranky and staying only on the couch Saturday. So, we checked in this morning.
Her lab work came back normal. Kidney function was better than even baseline. Her blood work was OK, not great, but OK. She is still low on her blood counts, but not super concerning. Her gums have been swollen and she has been in pain while trying to eat. We think this is what is causing her problems. We swabbed her mouth to test for some viruses. If she does have something, then our problem will be she is so immuno-suppressed that these viruses just wipe her out!!! For now, we are back in the hospital.
Our prayer is we can: figure out what is wrong, treat her pain (she seems to be in pain in her mouth), get her better.
Blessings
The Moody's
Her lab work came back normal. Kidney function was better than even baseline. Her blood work was OK, not great, but OK. She is still low on her blood counts, but not super concerning. Her gums have been swollen and she has been in pain while trying to eat. We think this is what is causing her problems. We swabbed her mouth to test for some viruses. If she does have something, then our problem will be she is so immuno-suppressed that these viruses just wipe her out!!! For now, we are back in the hospital.
Our prayer is we can: figure out what is wrong, treat her pain (she seems to be in pain in her mouth), get her better.
Blessings
The Moody's
Tuesday, December 10, 2013
Another Transfusion
Amelia has been doing pretty well. She has been eating well...not quite pre infection well...but well enough. This weekend she started sleeping more and we had been warned this may happen. We had a clinical appointment Monday and decided to do another transfusion today. She is heading to a local office to have the transfusion this afternoon. We are hopeful this will...again...be the last transfusion. We may need to give her a shot that will help kick start her blood system.
Other than this, she has been doing great. We hope she will continue to improve.
We continue to pray Amelia thrives and improves.
Blessings
The Moody's
Friday, November 29, 2013
Home...Again
Well...after 48 hours of no positive cultures and no negative blood work, we were discharged this evening and we are now home.
Our prayer we do not head back for about 4 months.
The Moody's
Thursday, November 28, 2013
No Changes
Amelia had a pretty good night and a good day...O...UM...Happy Thanksgiving!!!
We are spending another night in the hospital. There has not been a lot of change. She is happier, but still has very soft stools and her heart rate is still a little high...140-155. She has been below 130 down to the 110s sleeping. The cultures have all been negative so far. She will have more blood work tomorrow and if everything is OK, I think we will be released because she will be maintaining her levels. The floor doctor seems to think, if her blood work is at baseline tomorrow, then this is just something they see from time to time in colostomy kids.
This is our prayer tonight, that her soft stools are just a byproduct of the colostomy and we will be able to enjoy the remainder of our holiday at home.
Blessings
The Moody's
We are spending another night in the hospital. There has not been a lot of change. She is happier, but still has very soft stools and her heart rate is still a little high...140-155. She has been below 130 down to the 110s sleeping. The cultures have all been negative so far. She will have more blood work tomorrow and if everything is OK, I think we will be released because she will be maintaining her levels. The floor doctor seems to think, if her blood work is at baseline tomorrow, then this is just something they see from time to time in colostomy kids.
This is our prayer tonight, that her soft stools are just a byproduct of the colostomy and we will be able to enjoy the remainder of our holiday at home.
Blessings
The Moody's
Wednesday, November 27, 2013
We Were Doing GREAT...BUT...
Amelia had a GREAT week out of the hospital. She was eating more and
her first clinicals were awesome. But, we had a home nurse come in for
a dressing change. Some how, her PICC line got pulled out a little and
the nurse pushed it back in. This sent Amelia over the cliff. Her
heart beat jumped from about 120 to 150 and she had a horrible 16
hours. She was very fussy and did not sleep well Tuesday night. We
talked to our cardio team and...you guessed it, we have check back into
Hotel Phoenix Children's...we are hoping for some quick
observations...as in a 24 hour visit. We will see tomorrow.
So far, everything has been positive. Lab work is showing strong returns, but some of her blood work is still very low (white blood counts). Her kidney function is good. The docs are testing her blood for anything is the first results have been negative. She is on an antibiotic as a precaution. We hope to have this as our shortest trip so far.
We pray for no negative test results. Amelia has already jumped back a bit, but we are looking for more improvements tomorrow.
We checked out in time to be out before Thanksgiving, but it looks like we will spend at least part of our Thanksgiving in the hospital.
Blessings
The Moody's
So far, everything has been positive. Lab work is showing strong returns, but some of her blood work is still very low (white blood counts). Her kidney function is good. The docs are testing her blood for anything is the first results have been negative. She is on an antibiotic as a precaution. We hope to have this as our shortest trip so far.
We pray for no negative test results. Amelia has already jumped back a bit, but we are looking for more improvements tomorrow.
We checked out in time to be out before Thanksgiving, but it looks like we will spend at least part of our Thanksgiving in the hospital.
Blessings
The Moody's
Monday, November 18, 2013
Getting Close to Discharge
Amelia needed one more blood transfusion to get her over the hump.
We have been waiting since this morning and finally received blood this
evening. We are transfusing and then we will be discharged. We have
packed all our stuff but a few last things and are ready to head home.
It should be with in the next hour. We already have clinicals scheduled
for next week and have reviewed everything we need to with all the docs
and nurses. Our feeding pump has already been delivered, so we are
good to go. It will be good to be home.
We continue to pray for the transition home for Amelia, that she will continue to improve and get back to the eating schedule she had before everything happened.
We will post when we are walking out this evening and when we get home, just because we think that much of ourselves.
Here is a picture of how Amelia spend her last day in the hospital!!! Notice the chip at her hand and her other hand in the bag!!!
Blessings
The Moody's
We continue to pray for the transition home for Amelia, that she will continue to improve and get back to the eating schedule she had before everything happened.
We will post when we are walking out this evening and when we get home, just because we think that much of ourselves.
Here is a picture of how Amelia spend her last day in the hospital!!! Notice the chip at her hand and her other hand in the bag!!!
Blessings
The Moody's
Sunday, November 17, 2013
Planning On Our Last Night
We are planning on our last night in the hospital tonight. Tomorrow should be our check out day. We have been packing up and carting things home slowly this weekend. We are down to just enough to keep Wesley and Amelia happy tomorrow and allow them to nap tomorrow while we wait for discharge orders. We are expecting it to be mid to late afternoon.
Amelia was walking a lot today. She was actually asking to take a walk out of the room today. She is eating and drinking well, but still not enough. We are still pushing water in during the day, and nutrition at night.
We are very excited about heading home. It will be nice to be back on our schedule. Our prayer remains for Amelia to remain healthy after we get home and for her to get back to eating and drinking as much as she was before we checked in.
Blessings
The Moody's
Amelia was walking a lot today. She was actually asking to take a walk out of the room today. She is eating and drinking well, but still not enough. We are still pushing water in during the day, and nutrition at night.
We are very excited about heading home. It will be nice to be back on our schedule. Our prayer remains for Amelia to remain healthy after we get home and for her to get back to eating and drinking as much as she was before we checked in.
Blessings
The Moody's
Saturday, November 16, 2013
Making Preperations
Today we spent a lot of time making preparations to head home. We turned in our prescriptions for the meds we will need at home. We ensured all the paperwork for the colostomy was provided and we have been working to coordinate with a home nurse and medical supplies for when we are home. She had a GREAT day. It looks like she is ready to go home. We have a big lab draw in the morning to check one final set of labs, and if everything is OK, we will be cleared to go home on Monday.
Amelia has been eating a little better, but we still have a ways to go. We are excited to see her want to eat though. She is also drinking pretty well, but we are having force some water through her NG as well. We had a hunch we would have to go home on an NG tube. We (OK...mostly Kim) will work hard to get her off the tube quickly and back to eating well.
Our pray tonight is for the transition home. We pray Amelia will remain healthy and continue to improve on her oral feeds. We pray her blood counts will improve and she will have a short period with the colostomy.
Blessings
The Moody's
Amelia has been eating a little better, but we still have a ways to go. We are excited to see her want to eat though. She is also drinking pretty well, but we are having force some water through her NG as well. We had a hunch we would have to go home on an NG tube. We (OK...mostly Kim) will work hard to get her off the tube quickly and back to eating well.
Our pray tonight is for the transition home. We pray Amelia will remain healthy and continue to improve on her oral feeds. We pray her blood counts will improve and she will have a short period with the colostomy.
Blessings
The Moody's
Friday, November 15, 2013
Light
Preparations are being made for us to go home. It looks like it will be Monday or Tuesday. Amelia has been doing exceptionally well. She has keep her feeds down for several days, she is off all of her IV meds and her blood work appears to be stable. At this point. there is nothing more for the docs here to really do for her. It is just a matter of time for her body to continue the healing process. So, we have started to get the support set up for her to be home. This include medical supplies and a nurse to come and to dressing changes. She will go home with her PICC (we think) to all for blood draws. It looks like we will be getting weekly labs at this point. Unless the blood doctor recommend less than weekly blood draws, we will keep the PICC until she her labs are needed less than once a week. She will also be on an NG tube to all her to get the nutrition she needs at night to "catch up" for the day.
Amelia has been walking and eating more and staying out of bed more today. She is definitely ready to be home. Kim and I are ready to be home too and we just need some minor instructions on how we will need to care for her now that we are headed home and what the plan will be for clinical visits. She is doing very well though. Wesley is going to miss all the socialization he has been getting. All the nurses want to come say hi to him.
It looks like we will be on contact precaution at home. Her white blood counts are still about a quarter what they were before she checked in, so she is still suppressed a bit. These should slowly come up though. Looks like we will not be able to go to church again for this cold and flu season as a precaution again.
Tonight, we ask for prayers for Kim and I as learn what we will need to do to care for the colostomy and how to understand Amelia's nutrition needs and how to read what she is eating so we can give her enough food through her NG at night. Pray also that Amelia will begin to grow strong and healthy and recover from this trip to the hospital, to the point she was at before she got sick.
Blessings
The Moody's
Amelia has been walking and eating more and staying out of bed more today. She is definitely ready to be home. Kim and I are ready to be home too and we just need some minor instructions on how we will need to care for her now that we are headed home and what the plan will be for clinical visits. She is doing very well though. Wesley is going to miss all the socialization he has been getting. All the nurses want to come say hi to him.
It looks like we will be on contact precaution at home. Her white blood counts are still about a quarter what they were before she checked in, so she is still suppressed a bit. These should slowly come up though. Looks like we will not be able to go to church again for this cold and flu season as a precaution again.
Tonight, we ask for prayers for Kim and I as learn what we will need to do to care for the colostomy and how to understand Amelia's nutrition needs and how to read what she is eating so we can give her enough food through her NG at night. Pray also that Amelia will begin to grow strong and healthy and recover from this trip to the hospital, to the point she was at before she got sick.
Blessings
The Moody's
Thursday, November 14, 2013
Best Day Yet
Amelia had her best day yet. She keep her feeds down last night and ate quite a lot today (not close to enough, but a lot)! She walked the unit several times and was overwhelmed to see me after work. The docs are even amazed at how well she is doing today. All in all, a really great day.
We continue to pray for over all improvents and an increased desire to eat for.tomorrow.
Blessings
The Moody's
Wednesday, November 13, 2013
Not Liking the NG
We are not sure if Amelia's gut is not awake yet or if we were forcing too much food into her, but Amelia threw up last night after we starting the feeding and again today after they restated feeding. So we are a little frustrated, especially because she was a GREAT eater before we checked in. It will be time and work to get her back to her diet.
Amelia did have a date with the surgeon this morning to look at her wound. The surgeon was very happy with how she is progressing. There have even been rumors of home floating around the floor, though no specific dates mentioned yet.
This evening Amelia walked around the unit, completing 3 laps, more than half of which she did on her own without holding our hands. She did very well. We were very proud of how well she was walking.
Also, the blood clots in her leg and arm have disappeared...as in totally gone. This is awesome news because the medicine she would have had to take would have been administered in the form of a shot twice a day!!! So, it was great news to hear she would not need them.
Our prayer continues to be for nutrition this evening. We need her to not only start to eat more on her own, but to also keep the food down she is getting.
O...I forgot to mention that her platelets have been in the upper 90s the last few days. However, her red blood counts are a little low right now.
Blessings
The Moody's
Amelia did have a date with the surgeon this morning to look at her wound. The surgeon was very happy with how she is progressing. There have even been rumors of home floating around the floor, though no specific dates mentioned yet.
This evening Amelia walked around the unit, completing 3 laps, more than half of which she did on her own without holding our hands. She did very well. We were very proud of how well she was walking.
Also, the blood clots in her leg and arm have disappeared...as in totally gone. This is awesome news because the medicine she would have had to take would have been administered in the form of a shot twice a day!!! So, it was great news to hear she would not need them.
Our prayer continues to be for nutrition this evening. We need her to not only start to eat more on her own, but to also keep the food down she is getting.
O...I forgot to mention that her platelets have been in the upper 90s the last few days. However, her red blood counts are a little low right now.
Blessings
The Moody's
Tuesday, November 12, 2013
NG
Amelia did not eat very much today. The docs have been pushing to place an NG tube and we have been putting them off as much as we could. However, this morning she was down slightly on her weight and did not eat even close to what they wanted her to eat today in order to not need the NG, so she will be getting one tonight before bed. The is so we can push nutrition into her belly at night. This will accomplish two things: Giving her the needed nutrition to help her body to heal and allow her gut to wake up and start processing food. We are also hoping this will jump start her desire to eat more.
Tomorrow is also a big day for her bum (is that a weird statement???)!!! The surgeon is scheduled to take a look and see how she is progressing. The level of her healing, along with her blood count improvements (mostly white counts, which are slowly rising) are the pacing factors in our return home. She will be followed by the surgeon in out patient clinicals as long as she has the colostomy.
Pray the nutrition will jump start her gut and her desire to eat. Please also pray her healing has improved.
Blessings
The Moody's
Tomorrow is also a big day for her bum (is that a weird statement???)!!! The surgeon is scheduled to take a look and see how she is progressing. The level of her healing, along with her blood count improvements (mostly white counts, which are slowly rising) are the pacing factors in our return home. She will be followed by the surgeon in out patient clinicals as long as she has the colostomy.
Pray the nutrition will jump start her gut and her desire to eat. Please also pray her healing has improved.
Blessings
The Moody's
Monday, November 11, 2013
Eating, Walking and Playing More
Amelia is doing it all today. She is getting better every day. The surgeon is very happy with how she is healing.
Please continue to pray for her appetite to return and continued improvements.
Blessings
The Moody's
Please continue to pray for her appetite to return and continued improvements.
Blessings
The Moody's
Sunday, November 10, 2013
Eating A Little More
Amelia is eating a little more each day. She is on IV fluids and nutrition, so she is not eating much, but ever little bit helps. She will be moved off the IV fluids tonight in hopes of getting her to eat and drink more. We also had her walk around the unit today. She did so just holding my hand only.
We are looking forward to her wanting to eat more tomorrow and Tuesday as she comes of the IV stuff. Please pray she will want to and will keep her food down.
Blessings
The Moody's
We are looking forward to her wanting to eat more tomorrow and Tuesday as she comes of the IV stuff. Please pray she will want to and will keep her food down.
Blessings
The Moody's
Saturday, November 9, 2013
Nothing New To Report
Amelia had a good day. She was up walking several times. We were able to get her to eat a few bites of yogurt and quite a few cheerios. We were very excited for this.
Please continue to pray for improvements and her desire to eat more.
Blessings
The Moody's
Please continue to pray for improvements and her desire to eat more.
Blessings
The Moody's
Friday, November 8, 2013
52
...PLATELETS!!! She is moving higher!!! White blood cell count is still low.
We had a good day today. Amelia walked and sat up in bed today. She continues to make small improvements everyday. This evening, she had a blood clot in her diaper, so we are holding on the food and water for yet another day. We still do not know how long before we will go home. Since her white blood cells are low, we still have some things to work on. We have been working with Physical Therapy and Occupational Therapy to build her strength back while she is in. She is weak from not really being up and walking around for nearly a month now.
Pray for continued improvements and that we are able to build her strength. Also pray she gets her appetite back and gets back to the place she was at home, eating and drinking extremely well.
Blessings
The Moody's
We had a good day today. Amelia walked and sat up in bed today. She continues to make small improvements everyday. This evening, she had a blood clot in her diaper, so we are holding on the food and water for yet another day. We still do not know how long before we will go home. Since her white blood cells are low, we still have some things to work on. We have been working with Physical Therapy and Occupational Therapy to build her strength back while she is in. She is weak from not really being up and walking around for nearly a month now.
Pray for continued improvements and that we are able to build her strength. Also pray she gets her appetite back and gets back to the place she was at home, eating and drinking extremely well.
Blessings
The Moody's
Thursday, November 7, 2013
A Great Day
Amelia did much better today. We had her up and walking several times and sitting on her own in her bed, playing with one of her puzzles. Her platelets are a little higher today again which is GREAT news. The surgeon is still slightly concerned about her eating, so we are not able to feed her yet. We should be able to start tomorrow or Saturday. Her belly still looks great though, so we are hopeful the food will come soon.
Our prayer tonight is she will be able to eat soon.
Blessings
The Moody's
Our prayer tonight is she will be able to eat soon.
Blessings
The Moody's
Wednesday, November 6, 2013
Much Improved Today
Amelia went down for her exam this morning about 9:30. The surgeon was again very happy with how Amelia is progressing. Her tummy is also doing much better today. Before the exam this morning, she was lying in bed normally, not arching over a pillow the way she has been for the last three days. This afternoon, she has been awake and interacting with us, even interested in coloring.
There is more good news on her lab work front as well. Her platelets are higher then they have been in a while, in the 30s! Still very low, but improving. Her CMV levels are "detectable, but not quantifiable" which is more good news. Finally, the blood work they sent out came back with, I think two levels of elevated levels out of 8. For what they were testing for, she would need to have 5 of 8 markers showing (some of which are observation markers as well and those are fading).
So, all around a much better day today and with several good improvements. We still have a ways to go though, but it looks like we are improving.
Our prayer tonight is for continued improvements. We do not want to move backward now that we appear to making good forward progress.
Blessings
The Moody's
There is more good news on her lab work front as well. Her platelets are higher then they have been in a while, in the 30s! Still very low, but improving. Her CMV levels are "detectable, but not quantifiable" which is more good news. Finally, the blood work they sent out came back with, I think two levels of elevated levels out of 8. For what they were testing for, she would need to have 5 of 8 markers showing (some of which are observation markers as well and those are fading).
So, all around a much better day today and with several good improvements. We still have a ways to go though, but it looks like we are improving.
Our prayer tonight is for continued improvements. We do not want to move backward now that we appear to making good forward progress.
Blessings
The Moody's
Tuesday, November 5, 2013
Still Fighting Gas
Amelia's belly is still full of air. She had a rough couple of hours this morning and a rough day. The nurse finally put a NG tube in about lunch time and pulled about 500-700 ml of air and fluid from her belly (over half a quart). She has been extremely uncomfortable. We have been trying to get her to walk to help her pass gas, but it has been slow going.
She is doing well for everything else, except for her platelets. She is still very low. We did not get the blood work results yet. Hopefully that will come tomorrow.
We think the surgeon is planning on taking her in to stitch the wound in her bum to help it heal. We are not completely sure on that though, it is still just a rumer for now.
Continue to pray for relief from the pain in her belly.
Blessings
The Moody's
She is doing well for everything else, except for her platelets. She is still very low. We did not get the blood work results yet. Hopefully that will come tomorrow.
We think the surgeon is planning on taking her in to stitch the wound in her bum to help it heal. We are not completely sure on that though, it is still just a rumer for now.
Continue to pray for relief from the pain in her belly.
Blessings
The Moody's
Monday, November 4, 2013
Lots of Air
Boy has Amelia's tummy been full of air. Today, the docs put a cath in her stoma (I think, I was not here) and bled off some air and some poop. Apparently she has been stopped up for a few days or so. When I made it back in from work, she was sleeping soundly and did not wake up when the nurse took her temp. This is unusual because the thermometer they use under her arm makes her very upset.
We had some blood sent off for testing today. However, one of the cardio docs just came back on assignment and he still believes the blood count problem is simply continued fall out from all she has been through and her meds over the last two weeks. Hopefully he is right.
Tonight, a pray for me is some sleep. Amelia was up a lot last night and I am very tired. Pray for continued recovery for Amelia and the blood work comes back with nothing significant.
Blessings
The Moody's
We had some blood sent off for testing today. However, one of the cardio docs just came back on assignment and he still believes the blood count problem is simply continued fall out from all she has been through and her meds over the last two weeks. Hopefully he is right.
Tonight, a pray for me is some sleep. Amelia was up a lot last night and I am very tired. Pray for continued recovery for Amelia and the blood work comes back with nothing significant.
Blessings
The Moody's
Sunday, November 3, 2013
Better Rash and Lots of Air
We have seen a fairly good improvement in her rash over the last 24 hours. The docs still think it is a viral rash.
She has not really been interesting in eating and we have been trying to force her with little success. She ends up throwing up most of what we give her. Her belly has been growing, so she got an x-ray today. The x-ray shows lots of air in her tummy and the docs think she is a little backed up, probably form the pain meds. So, we are going to try to hold the food to allow her to pass the gas and then try to get her eating again. We hope this will not take too long. For now, she is back on IV fluid and nutrition. We also had her up and walking around today. The docs said this is really the only treatment for the gas in her belly. So, we made her do a half lap this morning and a three-quarter lap around the unit this afternoon. She is not so happy with us when we make her walk, but it has been good for her.
Her platelets were low again this morning. This has been puzzling the docs. Her spleen is large and the docs are unsure why. Your spleen, by the way, filters out the platelets, so we think spleen is over acting, but we do not know why. Tomorrow, she is going to have blood drawn and sent to a special lab for a specific test. I have no clue what it is called, so you will just have to be happy with that description. Her bum is continuing to improve.
Pray we can figure out why her platelets are not sticking around and for her gut to start working to pass the gas in her belly. For now, everything else seems to be going the right direction.
Blessings
The Moody's
PS: Wesley is still having a grand old time hanging out at the hospital, flirting with the nurses and checking up on his sister to ensure the nurses are doing what they need to do.
She has not really been interesting in eating and we have been trying to force her with little success. She ends up throwing up most of what we give her. Her belly has been growing, so she got an x-ray today. The x-ray shows lots of air in her tummy and the docs think she is a little backed up, probably form the pain meds. So, we are going to try to hold the food to allow her to pass the gas and then try to get her eating again. We hope this will not take too long. For now, she is back on IV fluid and nutrition. We also had her up and walking around today. The docs said this is really the only treatment for the gas in her belly. So, we made her do a half lap this morning and a three-quarter lap around the unit this afternoon. She is not so happy with us when we make her walk, but it has been good for her.
Her platelets were low again this morning. This has been puzzling the docs. Her spleen is large and the docs are unsure why. Your spleen, by the way, filters out the platelets, so we think spleen is over acting, but we do not know why. Tomorrow, she is going to have blood drawn and sent to a special lab for a specific test. I have no clue what it is called, so you will just have to be happy with that description. Her bum is continuing to improve.
Pray we can figure out why her platelets are not sticking around and for her gut to start working to pass the gas in her belly. For now, everything else seems to be going the right direction.
Blessings
The Moody's
PS: Wesley is still having a grand old time hanging out at the hospital, flirting with the nurses and checking up on his sister to ensure the nurses are doing what they need to do.
Saturday, November 2, 2013
Minor Improvements
We continue to see very minor improvements. Her rash seems to be a little better and the surgeon is very pleased with her colostomy and healing on her bum. We have put her back on her rejection meds and the docs think the rash is viral. They are expecting it to pass in the next few days. We had her up and walking around, doing a half lap around the floor twice and are trying to get her to eat more. Her days and nights are OK, not bad, but not really good either.
Please keep praying for her appetite to come back and for her rash to subside.
Blessings
The Moody's
Please keep praying for her appetite to come back and for her rash to subside.
Blessings
The Moody's
Friday, November 1, 2013
Just A Day
Not really better, but not worse either. The rash she has is still covering most of her body other than around her belly. There are no significant improvements in her labs today. She has been running a slight fever and that has continued today, though if fluctuates a lot.
We continue to hope to see improvements this weekend as we move further from the colostomy. The sore on her bum is looking much better today. Her body is definitely enjoying not having the sore to contend with!!!
Please pray for a return of her appetite and for all around improvements. Our plan is to work on getting her to walk around tomorrow, maybe even out of her room and down the hall.
Blessings
The Moody's
We continue to hope to see improvements this weekend as we move further from the colostomy. The sore on her bum is looking much better today. Her body is definitely enjoying not having the sore to contend with!!!
Please pray for a return of her appetite and for all around improvements. Our plan is to work on getting her to walk around tomorrow, maybe even out of her room and down the hall.
Blessings
The Moody's
Thursday, October 31, 2013
Rough Day
Amelia had a rough night last night and a rough day today. She seems to be a some pain from the surgery yesterday. In addition, she has developed a rash of some type or some type of reaction to everything going not, we are not sure yet. She has also been running a slight fever. The docs and nurses do not seem to be too worried at this point though. For now, we will continue to monitor.
Pray for a peaceful night (even though many of you are probably reading these in the morning since I do not have a chance to update until late).
Blessings
The Moody's
Pray for a peaceful night (even though many of you are probably reading these in the morning since I do not have a chance to update until late).
Blessings
The Moody's
Wednesday, October 30, 2013
Recovering and Resting
The surgeon came up to our room after the surgery and was very pleased with how things went. She handled the anesthesia extremely well, have very little bleeding and was extubated with no problems. She is now sleeping and resting with no issues.
So, for the Colostomy: We were able to get a number of doctors down to confirm the recommendation to proceed, from our heart team to a number of peds surgeons to the Big Boss Surgeon. So we moved forward. For what it is: A colostomy is a process to bypass the intestinal track at the end of the colon to an external bag (a Stoma). This allows her poop to drain to the bag, giving her bum an chance to heal. The docs also removed as much of the damaged tissue on her bum as possible. Fortunately, it does not appear the infection made it to her sphincter or up further into her bum. The prognosis for the colostomy is to allow her bum to heal, which could take many months, and then go back in and undo the colostomy to allow for a normal intestinal track. So, this should be a temporary solution to allow for her body to heal.
We are still unsure how much longer we will be in the hospital (we still need a few more points before the next visit would be free given that we seem to never be able to stay for less than a week and a half). Amelia is a fighter though and we will fight with her.
We ask for prayers of thanks tonight for a successful procedure. We also ask for no infections as a result of the procedure and she has a restful night. Tomorrow, we will be looking for pain releaf and some early signs she is starting to heal.
Blessings
The Moody's
So, for the Colostomy: We were able to get a number of doctors down to confirm the recommendation to proceed, from our heart team to a number of peds surgeons to the Big Boss Surgeon. So we moved forward. For what it is: A colostomy is a process to bypass the intestinal track at the end of the colon to an external bag (a Stoma). This allows her poop to drain to the bag, giving her bum an chance to heal. The docs also removed as much of the damaged tissue on her bum as possible. Fortunately, it does not appear the infection made it to her sphincter or up further into her bum. The prognosis for the colostomy is to allow her bum to heal, which could take many months, and then go back in and undo the colostomy to allow for a normal intestinal track. So, this should be a temporary solution to allow for her body to heal.
We are still unsure how much longer we will be in the hospital (we still need a few more points before the next visit would be free given that we seem to never be able to stay for less than a week and a half). Amelia is a fighter though and we will fight with her.
We ask for prayers of thanks tonight for a successful procedure. We also ask for no infections as a result of the procedure and she has a restful night. Tomorrow, we will be looking for pain releaf and some early signs she is starting to heal.
Blessings
The Moody's
Colostomy
The Docs came up and let us know the recommendation was to move forward with the Colostomy. There were about a dozen docs, including the Big Boss Doc for all the Surgeons here at PCH (Chief of Surgery), I think that is who they said was down. The recommendation was pretty unanimous. So now we are waiting for her to come back. I will give more details about the Colostomy later.
Pray for the procedure and for no infections and limited bleeding.
Blessings
The Moody's
Pray for the procedure and for no infections and limited bleeding.
Blessings
The Moody's
Tuesday, October 29, 2013
Possible Plan for her Bum Infection
After further considerations and consultation with other experts, the General Surgeon, along with our cardio team and other specialists think it wise to have a group of doctors take another look at the infection on Amelia's bum to consider a procedure to allow her stools to drain to a bag, or, continuing with limiting solid food intake in order to reduce her stools. The procedure will allow her bum to heal easier and faster. She is scheduled to head down just after lunch.
At this point, Kim and I are torn. The procedure would allow for a cleaner wound area and hopefully a quicker healing and recovery. However, it is an operation and there are considerations, as is so with any operation. She did have a rough point today when the nurses needed to change her diaper. The change was not as smooth as it usually is and Amelia became quite upset. It is a very trying ordeal to change her diaper now because the sore on her bum is so bad and causes so much pain when we need to change her.
This evening we did have Amelia up walking around her room and sitting on a chair. She looked so good. Almost too good to be in a hospital. She was smiling and laughing with us and doing even more Amelia stuff. I know we have been saying that a lot, but there are a lot of things a 2 year old does and many of those things we have not seen for two to three weeks and you grow to miss them when you have not seen them in a while.
We continue to pray for God to touch Amelia and heal her bum. Tonight we ask for extra prays of healing on her bum such that the doctors taking a look tomorrow might say they are seeing significant healing and they do not need to do any procedures. If they do decide to move forward, we pray for safety from infection and bleeding as her immune system is still suppressed and her platelet count remains low. The good news there is they have not giving as many platelet transfusions over the last 2 days or so (maybe a half bag) and her counts have remained steady, although low (normal counts or 100 (thousand) plus and she has been in the teens the last few days (single digits last week).
Blessings
The Moody's
At this point, Kim and I are torn. The procedure would allow for a cleaner wound area and hopefully a quicker healing and recovery. However, it is an operation and there are considerations, as is so with any operation. She did have a rough point today when the nurses needed to change her diaper. The change was not as smooth as it usually is and Amelia became quite upset. It is a very trying ordeal to change her diaper now because the sore on her bum is so bad and causes so much pain when we need to change her.
This evening we did have Amelia up walking around her room and sitting on a chair. She looked so good. Almost too good to be in a hospital. She was smiling and laughing with us and doing even more Amelia stuff. I know we have been saying that a lot, but there are a lot of things a 2 year old does and many of those things we have not seen for two to three weeks and you grow to miss them when you have not seen them in a while.
We continue to pray for God to touch Amelia and heal her bum. Tonight we ask for extra prays of healing on her bum such that the doctors taking a look tomorrow might say they are seeing significant healing and they do not need to do any procedures. If they do decide to move forward, we pray for safety from infection and bleeding as her immune system is still suppressed and her platelet count remains low. The good news there is they have not giving as many platelet transfusions over the last 2 days or so (maybe a half bag) and her counts have remained steady, although low (normal counts or 100 (thousand) plus and she has been in the teens the last few days (single digits last week).
Blessings
The Moody's
Monday, October 28, 2013
Some Results
This morning during rounds, we were able to convenience the docs to have the General Pediatric Surgeon to come down for the biopsy to take a look at Amelia's bum. They were able get in touch with him and he was kind enough to rearrange his schedule. He rushed in from the outskirts of Phoenix and made it in in time to take a look at the infection on Amelia's bum. The docs now think this is what is causing our platelet and white blood count problems. The surgeon determined the infection is deeper than they originally thought.
As far as the bone marrow, the blood doc came in and said her marrow appears to be good, healthy marrow and appears to be producing all the good stuff it should. They are going to continue with a bunch of tests over the next several days.
So, now that the docs believe they know what is going on. Our plan for now is to put Amelia on clears for the next week or so and work to jump start her immune system. They do not want her eating anything to try to keep her from pooping more in hopes we can keep the wound clean to allow it to heal.
The blood bank doc has lined up several sets of platelets for us that match Amelia's antibodies in hopes she will not tear through them as fast.
Please pray Amelia's immune system still start to kick in to fight the infection and start to heal her body.
Blessings
The Moody's
As far as the bone marrow, the blood doc came in and said her marrow appears to be good, healthy marrow and appears to be producing all the good stuff it should. They are going to continue with a bunch of tests over the next several days.
So, now that the docs believe they know what is going on. Our plan for now is to put Amelia on clears for the next week or so and work to jump start her immune system. They do not want her eating anything to try to keep her from pooping more in hopes we can keep the wound clean to allow it to heal.
The blood bank doc has lined up several sets of platelets for us that match Amelia's antibodies in hopes she will not tear through them as fast.
Please pray Amelia's immune system still start to kick in to fight the infection and start to heal her body.
Blessings
The Moody's
Sunday, October 27, 2013
Bone Marrow Biopsy Tomorrow
Amelia had a GREAT day today (other than her platelets). We had her up and walking around and she actually sat (not just leaned over) in a chair today. This is the first time she sat in a chair (or anything other than her car set) for several weeks. She looked really good sitting. She had a little sparkle in her eye, something we have not seen in a number of weeks. She really had a great day and was smiling with us and talking and interacting.
The blood docs visited us this afternoon and said they were wanting to to a bone marrow test. They talked to us about the possibility last week if her platelets did not stabilize and they have not, so we are scheduled for a biopsy tomorrow at noon. We have also been working with a doctor at the blood bank and they are going to try to match her blood antibodies to platelets in hopes they can find a donor who's platelets will not be attacked by Amelia's immune system. Hopefully this will allow her platelets to last longer and help her improve faster.
She continues to improve her eating and lab work (other than platelets) continue to show slight signs of improvement as well. However, we still see no light at the end of the tunnel for a home coming.
Please pray for our bone marrow study tomorrow. The procedure carries a very low risk, but with her immune system still low, there is still the possibility. Please also pray we get some good news from the study. Finally, pray a compatible match can be found for her platelets so we can reduce the number of transfusions we are getting.
Blessings
The Moody's
The blood docs visited us this afternoon and said they were wanting to to a bone marrow test. They talked to us about the possibility last week if her platelets did not stabilize and they have not, so we are scheduled for a biopsy tomorrow at noon. We have also been working with a doctor at the blood bank and they are going to try to match her blood antibodies to platelets in hopes they can find a donor who's platelets will not be attacked by Amelia's immune system. Hopefully this will allow her platelets to last longer and help her improve faster.
She continues to improve her eating and lab work (other than platelets) continue to show slight signs of improvement as well. However, we still see no light at the end of the tunnel for a home coming.
Please pray for our bone marrow study tomorrow. The procedure carries a very low risk, but with her immune system still low, there is still the possibility. Please also pray we get some good news from the study. Finally, pray a compatible match can be found for her platelets so we can reduce the number of transfusions we are getting.
Blessings
The Moody's
Saturday, October 26, 2013
Working Bone Marrow
We received good news today about Amelia's bone marrow. She is producing platelets. The problem is her body is consuming them as she is producing them, so her counts continue to be low. Most likely, the culprit is (or was) virus and now her body is just continuing to attach the platelets she makes and those we are giving her. This is very good news. The doctors think it is just a matter of time before she will stop attacking the platelets. We are still hopeful for early to mid next week.
Amelia continues to eat limited solids today and we still make her walk around. She is coloring, talking and interacting a little more each day. Her bum is getting better and her kidney function has improved enough to increase some of the antibiotics she has been getting. All good signs. No target on going home yet. We will have to wait for her platelets to stabilize.
Please continue to pray for platelet stabilization and pray she does not catch anything since her immune system is still some what suppressed.
Blessings
The Moody's
Amelia continues to eat limited solids today and we still make her walk around. She is coloring, talking and interacting a little more each day. Her bum is getting better and her kidney function has improved enough to increase some of the antibiotics she has been getting. All good signs. No target on going home yet. We will have to wait for her platelets to stabilize.
Please continue to pray for platelet stabilization and pray she does not catch anything since her immune system is still some what suppressed.
Blessings
The Moody's
Friday, October 25, 2013
Eating Food
Today, Amelia was cleared to eat solid food ... so we gave her food! It was so great to see her not only eating, but wanting to eat food. It has been several weeks since she wanted to eat on her own. It was such a blessing and really warmed our hearts to see her eating. She did not eat very much, but anything at all voluntary was a huge improvement for us.
She also had a significant fall on the level of the rejection meds in her blood. After a week of not getting any medicine, the level has finally reduced enough to be back to where the docs want it to be for lab pulls. Her kidney function continue to improve as well and we remove the folley. We were excited this morning to hear her blood platelet count was in the 40s. She had been ranging in the single digits. This afternoon, she was back into the teens. We need to remain above 50 to be able to stop the transfusions, so she is getting more platelets as we speak.
Amelia was up an walking around again today twice. She is pretty shaky as we get her on her feet. As she walks around the room, she slowly gains stability.
We were reminded again tonight about how fortunate we are. Just after shift change, the was some type of emergency. We notice a sudden quick and urgent flow of nurses and other personel past our room. With how sad we are to be in the hospital with our Lady Bug, it could be much worse.
Please pray tonight for all the families on the floor. For Amelia, continue to pray for her platelets. We continue to wait for improvements here. The doctors are not too concerned about this yet, and we take their guidance.
Blessings
The Moody's
She also had a significant fall on the level of the rejection meds in her blood. After a week of not getting any medicine, the level has finally reduced enough to be back to where the docs want it to be for lab pulls. Her kidney function continue to improve as well and we remove the folley. We were excited this morning to hear her blood platelet count was in the 40s. She had been ranging in the single digits. This afternoon, she was back into the teens. We need to remain above 50 to be able to stop the transfusions, so she is getting more platelets as we speak.
Amelia was up an walking around again today twice. She is pretty shaky as we get her on her feet. As she walks around the room, she slowly gains stability.
We were reminded again tonight about how fortunate we are. Just after shift change, the was some type of emergency. We notice a sudden quick and urgent flow of nurses and other personel past our room. With how sad we are to be in the hospital with our Lady Bug, it could be much worse.
Please pray tonight for all the families on the floor. For Amelia, continue to pray for her platelets. We continue to wait for improvements here. The doctors are not too concerned about this yet, and we take their guidance.
Blessings
The Moody's
Thursday, October 24, 2013
Up and Walking
Every day, we continue to see improvements, though they are small, they are improvements. The big news today, we were able to get Amelia up and have her walk around, twice. The docs are still concerned about how much her immune systems has been hit from everything, so we are limited to her room, so we just did a lap around her bed. It was great to see her walking.
Her labs are continuing to show slow improvements. The good news on her labs today is her kidney function is almost to a point the docs are happy with. Her rejection meds are continue to come down as well which is good because they were way too high. We are still waiting for her bone marrow to kick in and start to produce platelets. We were hoping to give her the first solids since Friday, but we were not able to coordinate with everyone and so never got the OK. We will try again tomorrow.
Finally, we brought a coloring book from home and gave it to her this afternoon and she was very excited to color. We here so excited to see Amelia coloring again.
Please keep praying for her immune system to start to kick in. She will be getting some medicine to try to kick start her immune system tonight. This is really the last improvements we are waiting on. Pray also for everything else to continue to improve. Finally, please keep praying she does not develop any new areas of concern.
Blessings
Brian
Her labs are continuing to show slow improvements. The good news on her labs today is her kidney function is almost to a point the docs are happy with. Her rejection meds are continue to come down as well which is good because they were way too high. We are still waiting for her bone marrow to kick in and start to produce platelets. We were hoping to give her the first solids since Friday, but we were not able to coordinate with everyone and so never got the OK. We will try again tomorrow.
Finally, we brought a coloring book from home and gave it to her this afternoon and she was very excited to color. We here so excited to see Amelia coloring again.
Please keep praying for her immune system to start to kick in. She will be getting some medicine to try to kick start her immune system tonight. This is really the last improvements we are waiting on. Pray also for everything else to continue to improve. Finally, please keep praying she does not develop any new areas of concern.
Blessings
Brian
Wednesday, October 23, 2013
A Good Day
Amelia had a good day today. She is more aware today than yesterday and this morning she waved hello to me. She is interacting and talking a little more. Most of her labs continue to improve slowly. There are still a few that we are waiting for improvements.
As you know, the dehydration hit her kidneys. Though her labs for the kidneys has shown improvement, we still have a ways to go on them. As she improves here, we should see some other improvements as well. She has had a good day improving her urine output and the docs are encouraged on that front. Her bone marrow has also taken a hit from everything going on (I am not sure I totally understand why at this point). She has had a few infusions of platelets and a few red blood products. She is a clot in her right are we have not been able to treat because of the other problems at this point.
As you can see, we are improving but still have some road to travel before we are done. Please pray kidneys continue improve so she can process her rejection meds and get her immune system fighting again. Pray her bone marrow starts to kick in and produce the stuff she needs there as well.
Blessings
The Moody's
PS: O yeah...that other guy too! Wesley is still doing great. Pray he continues to do well and stay healthy visiting his sister.
As you know, the dehydration hit her kidneys. Though her labs for the kidneys has shown improvement, we still have a ways to go on them. As she improves here, we should see some other improvements as well. She has had a good day improving her urine output and the docs are encouraged on that front. Her bone marrow has also taken a hit from everything going on (I am not sure I totally understand why at this point). She has had a few infusions of platelets and a few red blood products. She is a clot in her right are we have not been able to treat because of the other problems at this point.
As you can see, we are improving but still have some road to travel before we are done. Please pray kidneys continue improve so she can process her rejection meds and get her immune system fighting again. Pray her bone marrow starts to kick in and produce the stuff she needs there as well.
Blessings
The Moody's
PS: O yeah...that other guy too! Wesley is still doing great. Pray he continues to do well and stay healthy visiting his sister.
Tuesday, October 22, 2013
Rough Night - Better Day
Amelia had a rough night last night. It seemed like every 15-45 minutes something was being done: be it a doctor or nurse doing an exam, medicine coming on or off, lab draws or Amelia pulling something out that needs to be addressed, it was just a long night. In addition, one of her lab results showed positive for a virus she had from Transplant time, probably just the result of everything else going on.
Today, however, there were some improvements. The sore on her bum is getting much better (we will still have to worry about the tissue problem for a while). The sores on her lips are looking better and her lab work continues to improve. Her kidney function continues to improve and she is starting to pee out the fluids we have pumped in since admission on Saturday. The really good news is her rejection medicine levels in her blood have come done significantly! They are still much higher than we would like, especially since she has not received any of those meds for 72 hours now! She is also slowly starting to do Amelia things again...just a few here and there, but more than we have seen in nearly two weeks!!!
We are hoping she is now over the hump. Hopefully now, her body will have a chance to start to heal from all the damage inflicted from whatever she has had and we will only continue to see improvements in lab results.
Please continue to pray for her to respond to the medicines and other things we are doing. She has been doing a GREAT job with the IVs and breathing tube, playing and pulling on them only slightly. Pray she continues to leave them alone as she continues to improve and becomes more active.
Blessings
The Moody Family
Today, however, there were some improvements. The sore on her bum is getting much better (we will still have to worry about the tissue problem for a while). The sores on her lips are looking better and her lab work continues to improve. Her kidney function continues to improve and she is starting to pee out the fluids we have pumped in since admission on Saturday. The really good news is her rejection medicine levels in her blood have come done significantly! They are still much higher than we would like, especially since she has not received any of those meds for 72 hours now! She is also slowly starting to do Amelia things again...just a few here and there, but more than we have seen in nearly two weeks!!!
We are hoping she is now over the hump. Hopefully now, her body will have a chance to start to heal from all the damage inflicted from whatever she has had and we will only continue to see improvements in lab results.
Please continue to pray for her to respond to the medicines and other things we are doing. She has been doing a GREAT job with the IVs and breathing tube, playing and pulling on them only slightly. Pray she continues to leave them alone as she continues to improve and becomes more active.
Blessings
The Moody Family
Monday, October 21, 2013
Still Working Discovery
OK...so for a little more details on our update (I was too tired last night from not sleeping the night before). Where to start...lets go with a blood transfusion. She got one yesterday. Her blood counts were low (hemoglobin sp???), so the docs elected to go ahead with a transfusion yesterday. In addition, her platelets were low, so she also got some of those today. She has been drinking on her own today. In fact, she downed about 15 oz of pedialite this afternoon in about 30-60 minutes. She has also been getting antibiotics and other liquids. We think she is pretty full on fluid now tonight, which is good, and we are working to get her to pee it out. The dehydration caused her immunosuppressant meds to become concentrated in her blood, and the only way to treat that is to get her to pee. We also think that as she starts to reduce the rejection medicine in her body, she will be able to attack any infection she might have better.
Now for the cause...we think. The good news is all of her cultures have come back negative and she had another echo today: Report - Excellent heart function. She still has a really sore tush. We spoke to the infectious disease doc and the general surgeon and they still thinks we are superficial on the infection on her bum. We still think this is the cause of her problems, along with the dehydration which is now under control. Unfortunately, the dehydration impacts her kidneys. So for now, we are working to get her kidney function back to normal, which might take a few days, which will effect how fast she processes her rejection meds, which effects how fast her body can help her heal.
I am sure the is a lot more I missed, but the last few days have been a blur with all the docs and info and tests. The good news for now is her heart function is perfect and the cultures have come back negative so far, so no blood infection or urinary track infection. Please keep praying for her to continue on the road to recovery and for Kim and I as we work to keep her improving and recovering (Kim mostly) and just working (Brian mostly...after all, we still have bills to pay!!!). As for Wesley...well I will let the next picture tell his story!!!
Yes!!! Those are Woody's feed from Toy Story!!! This is the little pad we have set up for Wesley for his time visiting his sister in the hospital. He has been having a good time.
Here is Amelia holding her "water".
Blessings
The Moody's (and Woody)
Here i
Now for the cause...we think. The good news is all of her cultures have come back negative and she had another echo today: Report - Excellent heart function. She still has a really sore tush. We spoke to the infectious disease doc and the general surgeon and they still thinks we are superficial on the infection on her bum. We still think this is the cause of her problems, along with the dehydration which is now under control. Unfortunately, the dehydration impacts her kidneys. So for now, we are working to get her kidney function back to normal, which might take a few days, which will effect how fast she processes her rejection meds, which effects how fast her body can help her heal.
I am sure the is a lot more I missed, but the last few days have been a blur with all the docs and info and tests. The good news for now is her heart function is perfect and the cultures have come back negative so far, so no blood infection or urinary track infection. Please keep praying for her to continue on the road to recovery and for Kim and I as we work to keep her improving and recovering (Kim mostly) and just working (Brian mostly...after all, we still have bills to pay!!!). As for Wesley...well I will let the next picture tell his story!!!
Yes!!! Those are Woody's feed from Toy Story!!! This is the little pad we have set up for Wesley for his time visiting his sister in the hospital. He has been having a good time.
Here is Amelia holding her "water".
Blessings
The Moody's (and Woody)
Here i
Sunday, October 20, 2013
Hotel Phoenix Childrens
We had to check Amelia into the hospital again. She had been a little cranky for a while and about a week and a half ago, it started to get worse. We went to see our pediatrician and she (our usual doc was on vacation...I think they should cancel vacations for doctors...but only cancel them for when they are needed!!!) thought Amelia might have Hand Food Mouth. So, we came home thinking she would be over this virus in the coming week. She spent the next seven days relegated to the couch. On Friday night, she took another turn the wrong way. On Saturday morning Kim and I decided it was time to come in. She had not been eating or drinking voluntarily and Friday night she was not happy all night.
Checking back into PCH for the first time in 19 months, we were excited it was so long, but sad the streak was over. Amelia was hooked up to an IV and blood samples were taken. Sure enough, even with how diligently we tried to get her to drink, she was dehydrated. Saturday night she continued to whine and moan with little real rest. Sunday, the docs wanted to get a PICC line in and sent her to the PICC specialists. She came back and the report was she might have an infection in / or around her bum (they found it trying to get a urine sample for culture tests). A general surgeon came to look at her and asked for a CT scan to see how deep the infection is.
This evening, the only things we know is she was dehydrated, but we think we have fixed that. The infection does not appear to be too deep, so we are probably going to have it drained tomorrow. Her heart function is perfect (did I forget to mention the docs cleared that first thing after admission???)!!! It looks like we will have at least a few nights back at Hotel Phoenix Childrens. That is OK, we needed to redeem our frequent stay points soon before they expired!!!
Wesley has been great, and we will have to share how this experience is different visit since Amelia has a sibling this time in the hospital.
Blessings
Brian
Checking back into PCH for the first time in 19 months, we were excited it was so long, but sad the streak was over. Amelia was hooked up to an IV and blood samples were taken. Sure enough, even with how diligently we tried to get her to drink, she was dehydrated. Saturday night she continued to whine and moan with little real rest. Sunday, the docs wanted to get a PICC line in and sent her to the PICC specialists. She came back and the report was she might have an infection in / or around her bum (they found it trying to get a urine sample for culture tests). A general surgeon came to look at her and asked for a CT scan to see how deep the infection is.
This evening, the only things we know is she was dehydrated, but we think we have fixed that. The infection does not appear to be too deep, so we are probably going to have it drained tomorrow. Her heart function is perfect (did I forget to mention the docs cleared that first thing after admission???)!!! It looks like we will have at least a few nights back at Hotel Phoenix Childrens. That is OK, we needed to redeem our frequent stay points soon before they expired!!!
Wesley has been great, and we will have to share how this experience is different visit since Amelia has a sibling this time in the hospital.
Blessings
Brian
Saturday, May 4, 2013
Taking Wesley Home!!!
We are all packed up and waiting for discharge papers to head home. Thank you for your prayers for our healthy baby boy!!!
Wednesday, May 1, 2013
It's A BOY
Wesley James Moody. Born at 8:04. 8 lb, 3 oz. Just over 20 inches. Wesley and Kim are doing well. We are relaxing in our room in the hospital.
Amelia was by today to say hello to her brother. She gave him a kiss on the head. Enjoy the picture.
Blessings
Amelia was by today to say hello to her brother. She gave him a kiss on the head. Enjoy the picture.
Blessings
Monday, April 29, 2013
Preparing for a Sibling
Amelia has been thriving since her transplant. She has been growing and enjoying life. Kim and I are getting her to say more words all the time (at least in her language, it is more words).
However, this week, the person of interest is not Amelia. This week, Amelia becomes a big sister. We are scheduled for a C-Section on Wednesday morning. So, we finished getting the house ready this weekend and are doing some final shopping in order to prepare for another addition to the Moody family.
Keep watching for an update and picture of Amelia's little brother or sister. We did make it this time. Doctors did not spoil the ending (or I guess it is the beginning).
Blessings
Amelia, Kim and Brian
PS: I noticed we did not post a result from the cath - no rejecting!!!
However, this week, the person of interest is not Amelia. This week, Amelia becomes a big sister. We are scheduled for a C-Section on Wednesday morning. So, we finished getting the house ready this weekend and are doing some final shopping in order to prepare for another addition to the Moody family.
Keep watching for an update and picture of Amelia's little brother or sister. We did make it this time. Doctors did not spoil the ending (or I guess it is the beginning).
Blessings
Amelia, Kim and Brian
PS: I noticed we did not post a result from the cath - no rejecting!!!
Thursday, March 14, 2013
Doing GREAT
Amelia did very well again. The doctors could not have been happier. We do not know results yet, should have them Friday. Thank you for your prayers.
Tuesday, March 12, 2013
Heart Birthday
It has been almost a year since Amelia received her heart (Friday March 15th is the actual day). She has been doing exceptionally well since last year at this time when she was in sever heart failure. She has grown by leaps and bounds, she runs around the house, almost faster than Kim and I can catch her, she has lots of teeth and seems to be about to walk through the door of talking (she has started to repeat things Kim and I say...kind of...at least mimic what words we say).
With the excitement of her "Heart Birthday" comes a scary time each year as well as she will need to have a cath and biopsy performed to check for cellular rejection of her heart. Her first annual biopsy is scheduled for tomorrow, Wed March 13th. Kim and I are really not looking forward to this hospital visit because for the last 6 months or so, Amelia has been very upset when going to any doctor appointments, even when they are not her's (example: Kim at the OB). This is normal, even for healthy kids when going to the docs between about 18 and 36 months of age. As an example of how we know she is aware of what the doctor is and what it means for her (especially her), when she bumps her head or stubs her toe at home, she points to the inside of her arm where she gets her blood drown and has a sour face. We ask her if she has an owie and she will point to where it hurts. It is both comical for Kim and I, and sad that she attributes that part of her body to being hurt.
Please pray for Amelia and the doctors as they check Amelia's heart tomorrow. Please pray for mom and dad too as they have to give their little lady to the hands of the docs and nurses to complete this procedure.
Bless God
Amelia, Kim and Brian
With the excitement of her "Heart Birthday" comes a scary time each year as well as she will need to have a cath and biopsy performed to check for cellular rejection of her heart. Her first annual biopsy is scheduled for tomorrow, Wed March 13th. Kim and I are really not looking forward to this hospital visit because for the last 6 months or so, Amelia has been very upset when going to any doctor appointments, even when they are not her's (example: Kim at the OB). This is normal, even for healthy kids when going to the docs between about 18 and 36 months of age. As an example of how we know she is aware of what the doctor is and what it means for her (especially her), when she bumps her head or stubs her toe at home, she points to the inside of her arm where she gets her blood drown and has a sour face. We ask her if she has an owie and she will point to where it hurts. It is both comical for Kim and I, and sad that she attributes that part of her body to being hurt.
Please pray for Amelia and the doctors as they check Amelia's heart tomorrow. Please pray for mom and dad too as they have to give their little lady to the hands of the docs and nurses to complete this procedure.
Bless God
Amelia, Kim and Brian
Tuesday, January 1, 2013
Another Exciting Year For Amelia...
We had another exciting year with Amelia. It started with us hoping to stay out of the hospital for a few years and that quickly changed. Since getting her new heart, Amelia has been thriving beyond all we could hope for. She has had an amazing last 9 months. We are now looking forward to seeing her continue to grow and thrive.
Amelia on the other hand is looking forward to something else entirely...being a big sister! Kim and I had our 20 week ultrasound just before christmas and our second child has been given a good bill so far. We are looking forward to welcoming him with us in May (no...we do not know the sex yet and if you want to know why I say "he", look back at one of our first posts).
Amelia, Kim and I pray you have a wonderful new year.
Bless God!!!
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