Looks like we are homeward bound

It is official.  We are being discharged tomorrow.  This is great news and we can't wait to be home again!!!

We pray Amelia will thrive at home and we will not need to return until May to undo hee colostomy.

Blessings

The Moody Family

Bone Marrow Results

We got our results today.  The hematologist said everything was normal - no elevated B-Cells.  This is really good news!!!  This should mean we will see improvements soon.  She continues to fluctuate her blood counts within the same ranges.

We are starting to get indication the docs want us to head home sooner rather than later.  Kim and I are a little concerned about this with her counts being low, but the hematologist seems to think we can manage that from home and our cardiologist things if we keep her immuno-suppresent levels a little low for now to allow her white counts to come up.  We will find out more tomorrow during rounds.

We are thankful tonight for the good news from the Bone Marrow results.  We are praying for our discussions tomorrow with our doctors.

Blessings

The Moody Family

Bone Marrow Postponed...To Today

Amelia went down this morning, was back in her room less than an hour later and running around after 3 more.  We should get results tomorrow.  Her platelets are relatively unchanged and her white counts are up slightly today, but we still have a long way to go.

Blessings

The Moody Family

Counts Unchanged - Bone Marrow Test Tomorrow

Nothing to report, which is why we have not reported in a few days.  The hematologist wants to do a Bone Marrow test again tomorrow, so she is scheduled to go down.  Some of her counts that I do not understand that were high are going down (good news!!!) and her platelets are fluctuating in the ranges they have been for the last two weeks (not good or bad!!!) and her white counts are on the low end of her range and still way too low (not good and kind of heading the wrong way)!!!

We are praying for positive results from the Bone testing tomorrow.  The hematologist is looking to see improvements in the counts in Amelia's bone marrow tomorrow as a result of the medicine she recieved.

Blessings

The Moody Family

(NG) Tube Be GONE!!!

We were able to take Amelia's NG tube out today.  She has been eating extremely well!!!  Enough so that the docs OKed removing her tube, so...IT IS GONE!!!

Today during rounds, we found out the only thing keeping us here is our counts!!!  The numbers we need is 50 platelets and 500 ANC (part of her white blood counts).  That is the good news...the bad news is today her platelets fell from 47 yesterday to 38 today and her ANC fell from 33 yesterday to 7 today!!!  One of the blood medicines she is on lowers her white counts, so that is kind expected.  However, tonight is the last dose of that medicine, so we hope to see improvements soon.

The other catch is the surgeon has said when her platelets come up to 50, we can reverse her colostomy, so we are going to push for that since it would be either now or in 4 -5 months.

So, we pray continue to pray for blood count improvements.

Blessings

The Moody Family

Holding The Course

Amelia continues to maintain her levels.  No improvements, but no backtracking either.  It is actually really sad.  Amelia has been her long enough now that she is "friends" with all the nurses.  She helps all the nurses and says hello and good bye to them as well.  We are happy she is no longer upset when they enter, but we have been here way to long!!!

Last night on our tour of the unit, Amelia decided to do something a little different...

 That is Woody and Jessie by the way.  She pulled them around the unit for a lap or two!!

The, we decided to have her pull her brother around the room too.

While Amelia's white counts remain low, Kim and I are concerned about taking her home.  We continue to pray for her white counts to go up!!!

Blessings

The Moody Family

No New News

We did not hear results from Amelia's biopsy.  Amelia did have a good day.  She was up walking, but is very unstable on her feet.  We think she is still going through slight withdrawals because she gets a little hyper just before the next dose is due.

Our hematologist spoke with us today and said the elevated B-Cells we are finding in Amelia's bone marrow is very rare...in fact it is so rare he is only able to find 5 other documented cases.  He said it is a form of PTLD, a lymphoproliferation disorder.  However, the medicine she is taking helps reduce B-Cells in the body and other doctors have had success using this medicine to treat this condition.

Since we did not hear about the biopsy, we are still praying for no rejection.  We also pray the meds she is on works to bring her B-Cell levels back down.

Blessings

The Moody Family

Preliminary Results

Amelia headed down for a cath (for heart tissue biopsy) and PET scan first thing this morning.  Preliminary results from the cath are the pressures in Amelia's heart look fine.  this was not a full cath, so there are really not many more results than that.  The unofficial results from the PET scan shows no cancer cells.  YEAH!!!  We should get full PET scan results tomorrow in addition to results from the biopsy tomorrow as well.  Other than that, Amelia is back and awake and eating dinner for the evening.  She seams to be doing pretty good...almost back to her normal self.

We are thankful for the positive results from the CATH and PET so far.

Blessings

The Moody Family

Getting A Cath

Ok...So I am really sorry about this post, but I do not understand everything going on, so there is going to be a lot that does not make sense!!!  We spoke to the hematologist today.  The docs think Amelia has a form of PTLD - Post-transplant lymphoproliferative disorder.  This disorder effects the B-Cells.  The hematology docs believe the increased B-Cells are what are filling up her bone marrow as well.  This would explain why her white blood cell counts & platelets have been so low, there is not enough room to produce enough of those cells. For now, the treatment for this is the bone marrow medicine she has been getting for a few weeks.

In addition, because Amelia was on such low doses of her rejection meds and because of the PTLD, the docs want to do a cath to biopsy her heart to check for rejection. While not overly concerned about this, Amelia has had some slightly positive antibodies the docs want to just do a thorough check for.  So, she is headed down first thing in the morning for the cath.  In addition, she will also get a PET Scan.  I believe that is looking for any cancer cells.  The elevated PTLD B-Cells can lead to some cancers, and the PET scan will check for that.

The good news about all of this is if there is anything found, it would be so incredibly early that there are lots of options to treat anything they find.  We will be trusting God that nothing comes back from all the tests and Amelia checks out with no problems.

So, as you can imagine, that is our prayer for the night.

Blessings

The Moody Family

Nothing New To Report

It is true.  Amelia has nothing major to report.  Platelets have remained constant in the low 30s.  She has not had a transfusion since middle of the week.  She has continued to do well off oxygen.  I guess the only real news is she is completely off sedation medication.

We are expecting a discussion with the hematologist who has been following and working for Amelia about his thoughts on her bone marrow tomorrow.

Tonight we pray for a good discussion with the hematologist tomorrow and a treatment plan that will get Amelia homeward bound.

Blessings

The Moody Family

Answers - We Think

We had a family care meeting (kind of) late this afternoon.  It was only the cardiologist, but they did have some answers...we think.  The blood docs (which is why we think we have an answer...we have not heard from them yet...he was only in the morning) think what has been causing low blood counts is other material in her bone marrow which limits the amount of space that can make the stuff she needs...I think that is what our cardiologist's translation of what the hematologist said.  Anyway, this is all preliminary as we have not heard from the blood docs directly on this for now.  This would be good news though as it is a possible answer.  We will wait to see from the hematologists later.

The other good news is she is off oxygen support now.  They took it off early yesterday morning.  With the IV lines removed on Wednesday and the oxygen off yesterday, we were hoping to walk last night for the first time since about Christmas, but it just did not happen...we ran out of time.  So, today, Amelia was up and walking...TWICE!!!  We were very impressed with her because the first time up walking, she did not a half lap, not even an entire lap, but two laps...TWO WHOLE LAPS!!!  We were so proud of her!!!  She had a really good day today.  She still has some minor shakes, but they are getting better and we hope she will continue to improve since she is walking.

For now, her blood counts are still not really improving significantly.  Her red counts are stable and mostly acceptable.  Her white counts fluctuate a lot and are still very low from time to time while also rising often as well.  Her platelets also fluctuate.  She seems to be slowly trending up, but she is still low and when she has a procedure planned, they pump her full of product and she gets little to no boost from the transfusion.  Generally, she has remained above 20 for the last number of days and is currently moving above 30.  We hope she will continue to move higher on these counts.  The docs are still trying to fine tune the medicine she is getting to boost bone marrow production.

While the answers around the bone marrow is good news, we still need to see significant improvements, and we really need to have the discussion with the hematologist to really understand what she has and how to completely treat it (though I think the doc said the meds she is on is what is needed to treat this problem).  We are also grateful for the improvements we have seen in Amelia over the last few days and pray for continued improvements.

Blessings

The Moody Family

Still Some Shakes

Last night was pretty rough!  Amelia was pretty whinny most of the middle of the night.  On top of that, our nurse was in the room what seems like every 2 seconds...ALL NIGHT LONG!!!  The only person who got a little sleep was Wesley.  OK...enough of my whining.

Amelia seems to be going through some slight withdrawals.  She is still a little cranky and a little shaky.  Following the extubation, she has been doing very well.  We have slowly been weaning her oxygen support and she is close to coming off the support.

The good news for today is Amelia is down to only her PICC line.  She had her pheresis, arterial and other IV lines all removed this morning with no problems.  Kim and I are super excited about that because this means we will be able to start to have her walk soon.  She is pretty week from being out for most of the last week and somewhat out for the week before that.  It has pretty much been Christmas since the list time she was really up and walking.  This will help her improve as well.

We are thankful the line removals went well today!  We continue to pray for her blood levels.  She is still fluctuating in the 10-40 range, going up and down regularly.

Blessings

The Moody Family

PS:  I do not remember if I mentioned that Wesley had his first tooth bottom front) poke through in the last week or so.  It also looks like he has the top two front teeth about to break through too!!!  We have been slowly getting him to eat people food too.  Not much, a few bites of apple sauce and Cheerios, but hey!!!...its progress!!!

The Shakes

The extubation went well!!!  Amelia did not desat much if ever after extubation and had a pretty good night.  Monday, we started to ween the sedatives Amelia has been on.  They are supposed have no withdrawal symptoms, but all the nurses (and parents) know otherwise.  So, Amelia has been going through withdrawals the last 24 hours or so.  There is a process to slowly come off the meds that we are working though, but Amelia gets pretty cranky with little hope of comfort.

Discuss surfaced today about removing the cath line in her leg that was used for the pheresis.  There was no room on the schedule, so we are planning for tomorrow.  This will be super news for a number of reasons, probably the biggest of which is we will be able to have Amelia walk more.  She has not had a chance to walk since just after Christmas, about a week and a half ago.

On the blood front, while she has not been as low as at the end of last year, Amelia is not really where she really needs to be.  This morning, she was still in the teens.  It is really strange - she seems to fluctuates greatly from blood draw to draw.  She ranges form the low teens to about 40.

While there still seems to be no conclusive cause for Amelia's problems, we are happy she seems to be trending better, even if only slightly.  We pray for Amelia's procedure tomorrow as they remove the cath line.  While it should go well, her platelets are still low enough to present some concern.

Blessings

The Moody Family

We Are Extubated

So far a success.  Headed to bed!  We pray she keeps her sats up for the night so we do not have to but the breathing tube back in!!!

Blessings

The Moody Family

Preparing for Extubation

Just got word we are going to try extubation this evening.  We are NPO (nothing by mouth) awating the attempt.

Sorry for the Delayed Post - Seeing Some Improvement

I did not realize it has been so long since I posted.  Please accept my apologies.  Amelia has remained under sedation for the last few days.  She was able to go about 40 hours with no platelets, as she maintained counts between 10 and 40 during that time.  However, last night, after a slow but steady decline, she dropped below 10 and they transfused again.  This morning she is back up into the 30s.
Because she has been intubated, we have kept her pretty sedated.  From time to time, she wakes up very disorientated and confused, flailing her arms and legs.  Some times it takes a few minutes to calm her down.  They moved her to a new medicine yesterday and since then, she has been pretty calm.

Today, we are starting to ween the ventilate settings in preparation of extubating tomorrow.  This will be great for Kim and I as that will allow us to reduce the sedation and give us the chance to interact with her again.  It has been a number of days since we have been able to talk to her and we miss our times of walking the unit.

The cultures from her bronchoscopy have started to show some slight bug growths.  Nothing really extreme, but the bug they found is one that could cause enough agitation of her lungs to lead to bleeding when enough of a presence.  At this time, the docs do not feel there is enough of a presence to cause the bleeding, but with her low platelet counts, it could be a factor.  Her platelet counts could have been the cause alone.  We will be watching the cultures over the following week and a half still because bugs grow the quickest, followed by viruses and finally fungi, taking a week to two weeks to grow.

The doctors were really optimistic this morning in rounds with the improvements we have seen in the last 24 hours, especially with the platelet retention we have seen.  We still foresee some time before we are able to head home, but we are also encouraged by the movement in the right direction.

While we continue to look for answers for Amelia's difficulties, we are greatful for the improvements we are seeing.  We also pray the extubation process will proceed with no complications over the next 24-36 hours.

Blessings

The Moody Family

"Happy New Year" - Ameila

Well...Amelia started ringing in the New Year...early...12:30 early to be exact!!!  That would be 30 minutes after the start of the year!!!  It started with her desatting (her oxygen sats falling) into the 80s.  She had been slowly getting worse over the course of the last few days, but it culminated last night just after the ball fell.  The docs slowly responded with increased support.  Finally, about 2:00, and after considering changes made over the last week, the decision was made to head down to get a CT scan of Amelia's chest, specifically her lungs.  The docs were concerned a blood clot had migrated to her lungs.  That is kind of ironic since we have had huge problems getting her to stop bleeding.  The thought was one of the meds we gave to help her clot did something non helpful - causing a clot that headed for the lungs.  The CT scan showed no clots.  That was GREAT news.  After returning to the room, she had an Echo ready to go.  That too showed no problems.  We finally returned to sleep about 4:00.  We received a few reports periodically for the rest of the morning.

During morning rounds, our Cardiologist decided to take a closer look at the CT scan with the radiologist.  They decided her lungs did not look right, kind of foggy, so the decision was to head down to the OR to have a bronchoscopy (a camera placed into her bronchial tubs) completed to take some pictures of her lungs and to get some fluids to test for bugs, viruses and fungi.  During the procedure, they found blood in her lungs.  They sent out the fluids for cultures and we are deciding how to decide to treat her for now.  We should know if she has any bugs or other problems over the next few days.

For the time being, Amelia is extremely sedated and resting comfortably.  Tonight, our plan to to simply let Amelia rest and recover from the day.  Tomorrow, we will start to discuss results and treatments.

The silver lining for today is Amelia's platelets have been on the rise.  She temporarily fell to single digits again early this morning, but have been on the rise since.  She is currently up to 41!!!  She has not been that high for weeks.  The other crazy thing is her next batch of platelets is coming in from Las Vegas.  The Blood Bank has been working to match the antibodies for several weeks and we have heard the next batch is coming from the City of Sin!!!

Our prayer this evening is rest.  Amelia needs to rest this evening.  We are also still looking for answers.  Answers for platelets and now also for the cause of the blood in Amelia's lungs.

Blessings

The Moody Family

Happy New Year

From the Moody Family at our second home...PHC!