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
Thursday, October 31, 2013
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
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