Monthly Archives: June 2012

Plateau

Reece had a steady day today.  The doctors feel he has plateaued a bit, but considering how sick his lungs are right now, they are not surprised.  He continues to rest on the ventilator.  He looks much more like himself, which is good.  Although, as a parent, it is almost harder now that he looks like himself because you actually see your child lying in the bed.  It makes it even more real to see him true to form.  Nevertheless, with the help of Prisma (the 24-hour dialysis machine), he is able to keep his fluid status down, which assists with breathing and weight management.  He went back on Prisma after his body reacted adversely to the dialysis machine that only runs over four hours.  Since Reece is sedated anyway, it makes sense to use Prisma as it is much more gentle on the body and they are able to balance his fluid input and output more effectively.

Reece’s lungs are quite sick from Adenovirus.  The Infectious Disease (ID) doctors find this to be the most concerning disease in his system.  While he tested positive on two different types of fungal cultures, his CT scan of his lungs does not indicate shapes and formations of fungal infections (although they could still be in there as well).  I’m not sure ID added any information to the mix that we didn’t already know.

It’s actually quite interesting–for lack of a better term–to work with many different consulting doctors from various functions.  Renal, pulmonary, ID, PICU, wound care (nursing), respiratory (techs)–they all have a different take on things.  They all show up with various information and at various times.  We have learned to continue to take the BMT docs words as a way to stay focused on the bigger picture of Reece’s health.  Certainly, the BMT docs consult these various doctors for their specialized knowledge.  But the BMT kids are a very special group with many underlying needs.  Until BMT (and now we also feel we are part of the “PICU family”, so we place a heavy weight on their words) weighs in, we don’t try to get to spun up over the details relayed by these specialty doctors or we would be having meltdowns every day.  I think the best thing to do is to not get lost in the minutia of every day, but rather try to take a step back and look at the larger picture.  That is what BMT is doing.  That is also why I am not blogging a play-by-play here every day.  If you look at Reece’s body, he doesn’t look like a healthy child, but his body looks peaceful.  That said, he has lots going on inside that little frame of his.  We have to trust that the doctors and nurses, for the most part, have the details covered.  We have to keep looking at the bigger picture of overall health to understand how Reece is really doing.  Right now, he is doing ok.  He has a long way to go.

Every time we run into someone who is from the BMT family (docs, nurses, other staff), they ask how Reece is doing.  That’s a tough question.  How does one answer that?  Ok?  Decent?  I know they are concerned for him, but when your kid is in the PICU, it means he or she is not well.  The truth is, he has good moments and tough moments.  I don’t post it all because it would take energy that I don’t have to hash it all out.  But regardless of outcome, we have a long and painful road ahead of us.

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Could This Be Any More Complex?

Life continues on the PICU.  The good news is that Reece has handled dialysis well.  They took him off of it yesterday afternoon to see what his body would do.  His potassium crept up throughout the night, so they are putting him back on dialysis (a four-hour run, versus the 24 hour machine he was previously on) in an effort to get that number under control.  Additionally, he is struggling with more fluid in his lungs, so getting dialysis running again will help.  His weight is almost back to normal, so he looks a little more like himself.  He was wakeful today and tried to mouth some words to us.  It is good that he was moving some and responding from a neurological standpoint, but it is uncomfortable to watch.  The goal is to get him further sedated to avoid this amount of wakefulness.

On Monday, Reece’s cultures from last Thursday came back positive for a fungal infection.  They suspect it is in his lungs, but aren’t certain where it is or how long he has had it.  He had a solid weekend, so it really isn’t anything new or changed that he is dealing with.  It is also possible that it has been in his system for quite some time.  They checked his eyes to make sure there wasn’t a fungal infection in them…they are clear.  Additionally, he’s rockin’ out on his white count.  Totally normal–probably better than mine today.  So, he’s got that going for him.

Reece continues to baffle the doctors…not only the BMT doctors, but the PICU doctors as well.  The TTP I discussed a few days back is still a topic of concern.  However, with all of the blood he is shredding, he is not needing many transfusions for red blood cells or even platelets.  The attending PICU physician yesterday–a hematologist–could not figure out why he wouldn’t be dropping red cells much more rapidly.  There is a chance that dialysis would mask the need for more red cells, so the rest period for the last 16 hours has been critical to understand that piece.  His hemoglobin did drop slightly overnight, but not drastically.  The doctors at rounds this morning still report confusion over how this could be.

The key to managing TTP is to remove the offending agent and manage him through whatever effects it has on his body.  Much like other BMT kids, Reece had some blood fragmentation.  The fragmentation increased the Thursday after ATG treatment began.  The docs aren’t sure if TTP was brought on by the ATG treatments or possibly one of the drugs that he has been on since his transplant…Cyclosporine (CSA).  While he hasn’t had a reaction from CSA in the past, it could do this at any time.  We have been told over and over that this the single most important drug that Reece is on.  It is the drug he takes to help his body accept his transplant and keep his GVHD at bay.  They are considering taking him off of CSA in an effort to get rid of the TTP.  However, the drug that they would replace the CSA with can only be given orally.  Reece is not absorbing anything through his gut right now and until that happens, it would be pointless to give him this replacement drug.  So there is a concern that without an immunosuppressive drug, his skin GVHD will flare again.  If the GVHD flares again, the docs are not willing to give him more ATG.  There are other ways to treat GVHD, but I suspect they are not nearly as effective.

I know that the BMT docs are strategizing over how to best handle Reece’s case.  They are the best in the world at what they do.  We’ll see what shakes out over the next 24 hours.

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Journal Entry #6: A Mother’s Journey

I’m just going to write from my heart tonight, because that is what I am feeling led to do.  I suppose the events of the last week, coupled with the outpouring of support, have inspired me to do so.  But as I sit here and reflect on all that has happened and all that will happen–whatever it may be–I can’t help but feel led to share.  And for as guarded and private as I tend to be (might be hard to believe if you only know me through the blog), I feel that Reece and our family’s story should be told.  That includes what you are about to read.

I actually feel like just writing without the intent to inform–writing down and capturing multiple things that I have been thinking about.  Some of these things have been brewing over many months and some just crossed my mind as recently as an hour ago.

It is a bizarre place to be, my life.  At times it feels awkward and clumsy and at times, it all seems to make sense.  It’s awkward in that everything is disjointed.  My son is critically ill, my family is scattered, my mind is clogged, my concentration is poor.  Yet, when I look at the footprint of my life, it all seems to add up.  Let me back up.  I am a human and Reece’s suffering will never make sense to me.  In fact, the only way it makes sense is in a Biblical way that we live in a fallen world and we know there will be suffering because of it.  But realistically, I am a human being and a mother, and I have a “few” questions for God when I get to Heaven.  Actually, I suspect it will all make sense when I die, so the thought of having a bone to pick with God just proves how human I am.  I know I will “get it” the moment I pass into Eternity.

It’s pretty easy to surmise why my life feels disjointed.  I want to share why, in many ways, it seems to make sense.  There are limitations to my explanation in that it won’t completely make sense until my time on earth is finished.  But many things have brought me to this moment.  I want to share it, because God is amazing in how he weaves the fabric of our lives together.  I have been in awe of this for quite some time.

When I was a little girl, I was a “doll girl”.  I always had one with me.  I distinctly remember being three or four, forgetting to bring my doll on a grocery store run with my mom, and carting around a bunch of bananas as a sub-standard and desperate replacement.  Fast forward 10 years and I loved babysitting.  That is, until I babysat a “crier”.  You know the type…the more silly faces and crazy antics you do to calm them down, the more it throws them into a crying frenzy.  That pretty much destroyed my desire to babysit and my tolerance for being around kids.  In fact, I still say I am not a “kid person”.  Yes, I love my kids and I enjoy being around kids in general, but I am no preschool teacher material.  Fast forward a few more years and I am a freshman in college.  I did great in school and pretty much sucked at taking care of myself.  A massive bout of anorexia nervosa ensued and I was a very sick person.  I made it through the year, moved home to live at my parents’ house, and kidded myself that all would get better.  Not only did I restrict what I ate, but I exercised for hours during the day.  I didn’t have a menstrual period for a year and a half.  The final straw came in July of that summer.  As I dragged my weary body up to bed one night, I thought, “At least if I die, I will be skinny.”  But that thought shocked me into reality and there was something inside of me that knew that I wanted to be a mother (remember, at this point of my life, I am the person in the restaurant who is highly annoyed when seated next to a family with kids).  I could somehow envision that I needed to get well for the kids I was supposed to have, that I could possibly jeopardize my ability to get pregnant in the future, and I told my parents that I needed help.  I spent the month of August in an intensive, outpatient program for eating disorders at Fairview University Hospital.  This is the same building that Reece is currently being treated.  It has been an ongoing struggle, but today, I am a healthy person.

Three years later, I am back at the U of MN getting my Master’s Degree at the Carlson School of Management.  I don’t feel called to be in business, but it is what I do in an effort to earn a decent amount of money out of college.  I go to work at a Fortune 100 company, meet Terry, get married, get pregnant, and have Reece.  I fully intend to return to work, but on maternity leave I get the distinct feeling I should be at home with Reece full-time.  (I also didn’t mention that in high school and college I fully believed that I was destined to become a great career woman and I would force my husband to stay home with kids…should I ever have any.  Insert eye roll at myself.)  I return to work knowing that I will be staying home with Reece, but I feel I need to close things out.  Six months later, I am home full-time.  I remember knowing in my heart that I need to be home with my child and that God had something big in store for me in my walk with Him.  It was the first time in my adult life that I was absolutely certain about my “career path” and it felt wonderful.  I was and still am able to savor being a mom.  Additionally, my faith grew by leaps and bounds.  I was immersed in bible study, met awesome friends, and thoroughly enjoyed the added time I was able to see my kids.

I never have regretted staying home full-time with my kids.  But I have always struggled with desiring to be something great and to know what my calling is…my true calling.  About a month before all of the craziness ensued with Reece last fall, it was placed on my heart that I need to stop looking beyond motherhood for my calling.  One of my great callings in life was and still is to be a mom.  This probably sounds like nothing, but to me, it was everything.  I had peace with this thought as it settled into the depths of my heart.  Considering my journey to become a mom, this realization was enormous.  It was and still is reassuring to look back and see God’s hand in all of this.

Reece was diagnosed with MDS about 2-4 weeks after this thought crossed my mind.  I know his life has its own purpose for him, but when I think about how purposeful the Lord has been in regard to my role as a mother, I am ever so grateful.  I have a lot of peace knowing that I had years of time spent with him that I wouldn’t have otherwise had, considering the way I lived my life.  God’s hand has and continues to be involved in this life’s journey.  I consider that He knows me better than I know myself and I thank Him for saving me.  I know that this circumstance, whatever it leads to, will be purposeful and used for many things.

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PICU Progress, BMT Concern

Yesterday, Reece was (and continues to be) on dialysis.  They were able to pull off a decent amount of fluid, which he tolerated well.  From both the PICU and BMT docs perspectives, he had a good couple of days.  He showed steady improvement.  His skin also looks very good–nearly a normal color.  Today, the plan was to continue with dialysis to pull more fluid off…he has a long way to go to return back to a normal weight.  He has handled dialysis very well so far.  They cut back on his sedation meds to make sure that he is moving some and can respond to commands.  He opened his eyes for us today, although due to heavy sedation, he doesn’t look at us and track with us.  He moved his head, hands, and feet when asked.  He also initiated breaths quite a bit when I was talking with him.  Our Reece is in there somewhere.

I am thankful for the BMT attending physician who was on this weekend.  He is one of the more seasoned doctors in the program.  He last saw Reece just days before we were discharged in April.  Needless to say, he was disheartened to see us in the PICU this weekend.  However, it is always good to get a fresh set of eyes and a fresh opinion.  This doctor comes at things with much BMT experience, but also as a parent.  And that is how he discussed things with us.

During rounds yesterday and today, we discussed Reece’s blood and how the red cells and platelets are basically breaking and fragmenting.  It can be caused by dialysis, but there is another known, but rare side effect of transplant that could cause it as well.  They only see maybe one child every two years who has this side effect call TTP (Thrombotic Thrombocytopenic Purpura).  Since Reece’s blood was doing this last week, prior to dialysis, it is probably more likely that he has TTP.  There is no way to treat it…it either goes away on its own or it gets worse.  The “getting worse” part looks pretty grim.  How many more rare side effects can this child acquire?

The diagnosis of TTP has not been made, but will be recommended to Reece’s primary doctor tomorrow.  It will be interesting to get her take and feeling on the entire thing.  Based on extensive conversation with the attending physician this weekend and what we were observing at home and in the hospital prior to last week’s crash, my gut feeling is that he has TTP.  There are many things to consider that I won’t get into right now, but many confusing things that have happened seem to make more sense in light of a TTP diagnosis, which is usually how kids get diagnosed with the condition.  In the doctor’s words, TTP is an “insidious” condition and often times it takes an “a-ha” moment to realize what is going on in a child with this condition.

So, from a weekend-only perspective, Reece has done well with noteable progress.  The doctors were impressed and pleased with how things have gone.  From a bird’s-eye view, he has layers of issues he needs to pull through.

We are told that the next few days to two weeks will be very telling as far as what Reece will be able to pull through.  We continue to ask for your prayers on his behalf.

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Dialysis

Yesterday was a better day for Reece.  I posted that he had a quiet night and that continued throughout the day.  By late afternoon, dialysis began and Reece handled it very well.  Because his body has been through so much, they began taking small amounts of fluid off overnight, but are going to see how he tolerates things for a day before taking fluid off more aggressively.  We were told to not expect to see his weight dramatically change for about 36 hours.  It will likely take close to a week before Reece is down to a normal weight for his size.  Yesterday, he was at 25 kilos.  That means he is carrying approximately 15 extra pounds of water weight.  And because most of that weight is in his tissues, it will take longer to get it extracted out of him.  There is no way to know how long he will be on dialysis.  The hope is that as his blood is cleaned in this process, his body will return to a better weight, which will help breathing and overall body functioning, and that the infections will have an opportunity to be removed from his body.

No matter what, we have a long road ahead of us and there are layers of issues that need to be resolved.  That is hard to come to terms with.  We have been able to do a fair amount of processing as a family, which has been helpful.  Again, Reece’s body will tell us what it can handle.  We continue to hope for his full recovery and trust in God.

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A Quiet Night

It was a quiet night here last night.  Reece’s body indicates he is clearing the lactate…his number is dropping (again, a very good sign).  The attending PICU physician just stopped by to say she is glad Reece is trending in a positive direction.  This likely indicates that Reece has a bug he is dealing with, but likely his gut is not failing or dying.  The tentative plan today is to start dialysis to get some fluid off and clear his blood.  She feels that he will likely become more responsive as his body feels better and they are able to wean sedation to some extent.  Remember, he is not responsive right now, but it is because of sedation.  He is not in a coma.  Yesterday, he responded at times when Terry asked him to move a hand or foot.  He also moved his head from side to side.  After the events of the afternoon transpired, they sedated him more and gave him more pain meds.  They also turned the ventilator up so that he was breathing at a higher rate.  Before they turned the rate up, he was initiating most of his breaths on his own.  Essentially, they turned everything up to support him more, but his lack of responsiveness right now is due to meds and not because he isn’t still with us.  When I awoke this morning, I went over to him and was talking and touched his head several times.  When I did so, he initiated his breaths on his own–above the ventilator setting that was already quite high.  He is still in there and aware on some level. 

I’ll update later today.  We are so thankful to have Reece covered in your prayers–keep them coming!

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Lifting Reece Up In Prayer

Friends, it is hard to believe we are at this place, but Reece had a very tough afternoon and we are not certain he is going to make it through the night.  He was doing well, but mid-afternoon his blood pressure dropped and his stats worsened.  They were planning dialysis today as his kidneys are failing, but they postponed due to his low blood pressure.  The one thing they are focusing on is his lactate, which is very high.  It likely indicates that something may be wrong in his gut.  Clinically, his gut seems ok (i.e. upon physical exam), but they are suspecting it is not functioning properly due to his lactate number.  They also believe there is another infection at work in his body.  We are told he is the #1 focus on the PICU tonight.  They believe that he can recover from this, but they have seen this go both ways and are highly concerned.  It will be a long evening here and we ask you to join us in prayer for Reece–for his healing, comfort, and life.  Reecie is tired; his body is tired.  He is our very special boy, we love him dearly, and we lift him in prayer to our loving God.

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