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.

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.

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.

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.

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.

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!

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.

He’s Doing It His Own Way

It’s been another slow, but stable-to-improving day for Reece today.  Tests came back positive for adenovirus in his blood (which we already knew) and lungs.  He had a CT scan done for his brain and lungs.  The brain CT was not a major concern, but they wanted to be thorough to make sure no bleeding had occurred in the brain.  The lungs look gunky, which we expected.  There is no way to tell from a CT scan what is fluid and what is virus, so we aren’t sure how much virus is there, but he has over 2 million copies in his system, so between his lungs and blood it is a lot.

The reason the brain became a topic of conversation was that compared to the first intubation when Reece was awake despite many sedation meds, this time he is on a relatively small amount of sedative and is still not very responsive (meaning it isn’t taking much to keep him asleep).  They were attempting to test his lungs to see if he would initiate any breathing on his own, versus letting the machine do all the work.  They weaned half of his sedation med and, eventually, it wore off and he began initiating small breaths on his own.  Additionally, the CT scan showed no bleeding in the brain (the brain tell the lungs to breathe, so if they weaned the meds and he wasn’t initiating breaths on his own, the next place they would look would be a brain hemorrhage).  This is all good news, of course.

Reece is retaining even more fluid, although he looks better as his weight is distributed differently while he is lying down.  They are giving him through the day to see if he can urinate enough to take the weight off that way.  More than likely, they will start dialysis tomorrow to help with that effort.  They believe not much more progress will be made in his breathing until they get the weight off.  They did wean down some of his oxygen last night, so that is also a good sign.  They also weaned down his breathing rate, which is how many breaths the machine makes him take in the course of a minute.  However, his weight needs to come down before more can be done.  No one is thinking he will be extubated prior to the weekend.  Dialysis is the next logical step in the process.

Because Reece’s internal temp is so low, he has a Bair Hugger on him, which is basically a plastic blanket with hot air blowing into it.  If he was awake, he would be loving it!!!  He wanted so many warm blankets prior to this.  The problem is that his skin looks red again today, when a few days ago it seemed to be returning to a normal color.  It is hard to tell if he is red due to the Bair Hugger or if it is his skin GVHD.  Realistically, we’ll have to wait and see what he looks like after he is off the blanket for a while.  If his GVHD does not respond well to the ATG, I am very concerned.  In fact, our doctor has not actually had a patient with skin GVHD use an ATG treatment.  Granted, she is one of the newer docs, so other doctors have, but that shows you how complicated Reece’s skin alone is in this fight.  Once we get past all of these immediate needs with weight, lungs, kidneys, etc, the focus must go back to the skin.  Usually kids with more severe skin GVHD than Reece do not survive it and most kids with similar or less severe GVHD respond well to steroids alone.  Again, here is our Reece carving out his own unique path.  Reece stands out in BMT because of his multiple, unique challenges with this.  And at this point, it seems to make sense to me, because he was never an ordinary child to begin with.  I could go on and on to tell you why, but I’ll keep it to myself for now.  I was reminded as I was writing this post of my all time favorite poem.  It couldn’t be more fitting in my mind of Reece at this time.  This one’s for you, Bud.

________________________________________

The Road Not Taken

Two roads diverged in a yellow wood, and sorry I could not travel both and be one traveler, long I stood and looked down one as far as I could to where it bent in the undergrowth;
Then took the other, as just as fair, and having perhaps the better claim because it was grassy and wanted wear, though as for that the passing there had worn them really about the same,
And both that morning equally lay in leaves no step had trodden black. Oh, I marked the first for another day! Yet knowing how way leads on to way I doubted if I should ever come back.
I shall be telling this with a sigh somewhere ages and ages hence: Two roads diverged in a wood, and I, I took the one less traveled by, and that has made all the difference.

~Robert Frost

Thinking Eternally

Reece had a stable night last night.  The doctors were pleased and felt that he had actually improved as far as how he is doing.  He is still intubated and unconscious.  He is not yet on dialysis, but it is likely he will be on it tomorrow as the medicine they are giving him to treat adenovirus is very hard on the kidneys.  His kidneys were stable all day.  Pulmonology–our good friends–consulted and did not feel a bronchoscopy was needed to do any further diagnosis.  Again, there is no evidence of a pulmonary hemorrhage.  Actually, a hemorrhage is much easier to recover from than a virus, as long as you survive the initial bleed.  In many ways, I wish that is what we are dealing with.  There’s another thing I never thought I would say, “I wish we were dealing with a hemorrhage.”  All doctors consulting on Reece believe he had bleeding in his stomach, but not in his lungs.  They believe several things contributed to yesterday’s crash.  Reece’s primary doctor believes there is likely another virus or bacterium that is working on Reece’s body since he crashed so quickly.  Nevertheless, this drug that they are giving Reece will hopefully help in turning things around.  The next days will be telling as far as his trend.  But today, the doctors were very pleased with how the first 24 hours went.

Our pastor visited today and prayed with us.  It was so refreshing to see someone from our church.  I can not believe we haven’t been to church since last November…I miss it.  We explained in some detail what happened yesterday and discussed how God’s timing was perfect in the entire thing.  Had the doctors not happened to be coming in the room just as Reece was crashing, Terry firmly believes he would not have survived…it happened that quickly.

Reece is what they call “on life support”.  That term led to some raw and real conversations between the doctors and us.  The fact is, there is a real possibility that Reece will not pull out of this.  He may crash again, he many not recover more than he has already, he may recover some things but have severe injuries, he may have only minor issues, or he may be fully restored.  We don’t have a prognosis, because we don’t exactly know what we are dealing with.  Only time will tell us how Reece is doing.  If he does recover, he will have months of physical therapy, as it is unlikely he will be strong enough to walk after this much time in bed.

I’m sure as you read this, unless you have been through something traumatic, you can not fathom what this is like.  I know a year ago I would have never been able to understand how people walk through these things.  But you must remember that it is very different to live through it every day, versus reading updates on the blog.  God has walked with us through this and worked on us even before Reece was diagnosed.  We know the doctors and nurses in the PICU.  We are in the same room in the PICU.  But for me, it has been a very different experience.  Unlike the first time we were here, I am relatively calm and at peace.  I know the reality of the situation and I know how to better cope with it than before.  Mostly, God has shown me how to think much more in the eternal perspective.  Our life doesn’t end with death on earth.  If I didn’t believe that to my core, I would be a total mess.  I would be grasping for every straw and hanging on every word of the doctors.  I have given this one to God.  He knows all about this and He loves Reece.  Reece’s life doesn’t end when he leaves this earth.  It has been and continues to be a privilege to be his mother.  I hope that I have more than five years with him here, but if he goes to Heaven before me, I have so much more to look forward to than I already had in the first place for when I leave this earth.  Our boy deserves to be his running, active, joy-filled self…be it here or There.  I really hope it is here and that we actually get to see him be himself again.  Reece will have a very long road of recovery ahead of him, but if he can recover, I want him here with us.  He has rallied through many tough things; he is a fighter.

A couple of years ago, our BSF lecture leader said something that has stayed with me.  Whether you perish as an infant or as an elderly person, it is but a blink of an eye in the grand scheme of eternal life.  We are just passersby here.  One of the many blessings of this situation is that my eyes have been opened to that.  Additionally, I have learned to let go of trying to control anything and to hand it over to God; to fully trust that He is in control and that no matter what, we are entrusted in His care.  That is easy to say, but it has taken me nearly seven months of true suffering and heartache (plus 32 additional years) to get there.  But once you take away the parameters of this life and what you know, it frees you to fully trust the Lord.  It takes the pressure off of you and all your expectations for this weary life.  I’m certain I will continue to struggle with doing so in other areas of my life, but right now, I have handed this one over–for today.

We are back to living moment by moment in the PICU.  Please pray for Reece’s continued healing and for his life.  Oh, how I love him and how my heart aches for him.

Many thanks.

Here Is What We Know

I was home with Scarlett today, so I was not in the room when the major events of the day transpired, but here is what I know:

Reece had an average morning and had lost a little weight overnight.  Apparently, his oxygen sats were a little lower, but not too concerning.  Around 2:45 pm he was finishing up OT and getting back in bed.  His saturations were in the high 80’s–this is not uncommon right now as his lungs have taken on fluid and are in the process of healing.  Terry was coaching Reece to take deep breaths when the doctors came in the room to inform him that Reece’s culture for the adenovirus came back positive.  They noticed that Reece’s O2 saturation was getting worse (even though Reece himself was calm and not fighting for breaths).  In a very quick fashion, Reece’s saturation dipped into the 30’s and the doctor called a Code Blue.  Within a minute people from BMT and the PICU flooded the room to assist.

Reece and Terry, I am told by various people, were calm and handled it well.  All parties involved handled it well.  They had an oxygen mask on Reece but he continued to struggle, so they quickly sedated him and intubated him in his room and then transported him down to the PICU.  According to the doctor, Reece was talking and responsive up until the time they sedated him.

Terry called me around 3 pm and I left Scarlett with our nanny to make the journey over to the U of MN.  When I arrived people were calm, but moving quickly.  They placed a triple lumen line in his leg in order to administer additional medicines and blood.  They placed a port in his hand in order to take his blood pressure regularly.

After chatting with the doctors, they are baffled as to how this all transpired and feel that because he desated so quickly, there is more than the adenovirus in his system.  The adenovirus, which causes multiple issues, including the common cold, will be very difficult for Reece to fight off.  However, his blood is telling us that he lost a pretty decent amount from this morning to this afternoon.  He needed both platelets and red cells when he arrived at the PICU.  They may not ever figure out what happened, but they will be doing ultrasounds and CT scans to try to answer some questions.  No one is thinking at this time that he had another pulmonary hemorrhage.  Go figure.

He is stable and unconscious.  The plan is to let him rest tonight.  He will likely be on dialysis tomorrow as the added blood products and meds are making him balloon to even bigger than he was.  They will likely do a bronchoscopy at some point in the near future.

It is a gross understatement to say that Reece has had a rough road.  Even the doctor has agreed to that at this point.  If he pulls through this and fully recovers he will be a walking miracle.

Tonight, I am praying for peace for my son; that his little body can rest, heal, and that he be delivered from his suffering.  Let’s continue to give this to the Lord, because the rest of us here on Earth are at a loss.

“I will not forget you! See, I have engraved you on the palms of my hands…”  Isaiah 49: 15b-16