Monthly Archives: April 2012

A Happy Easter, Indeed

Happy Easter!  It has been a strange feeling to not be at church for Easter Sunday or for the last four months.  Thank God we worship He who is not legalistic.

Again, Reece has been making great improvements!  Yesterday, I arrived at the hospital somewhat frustrated with the perceived shenanigans from Friday night.  Apparently, between the evening nurse and Respiration Therapy (RT) there was major confusion on what oxygen Reece needed to be on overnight.  Despite Terry’s best efforts to bring them up to speed (and no concerning signs from Reece himself), they managed to make decisions that reflected setbacks in his breathing.  He had a 45 minute fever spike Saturday morning, which led the doctor to say he wasn’t going to visit home yesterday.  All the overnight data that the doctors were looking at did not paint an accurate picture of how well Reece has been doing.  I was able to discuss my concerns with the doctor (who just started rounding on Thursday, so he hasn’t seen Reece for more than a couple of days) and he agreed that Reece was doing well, but needed to wait another day to go home for a visit.  Additionally, he has been keeping a close watch on Reece’s skin as I explained in my previous post.  He thought it looked maybe slightly better Saturday versus what he saw on Friday.  (As with all the other BMT docs, I do like this doctor.  He is just getting familiarized with Reece.)

We were all prepared to wait the extra day when who comes into the room but Reece’s assigned physician (Dr. S)!  I should explain how the “doctoring” works around here.  Each child is assigned to a BMT doc who is that child’s long-term care doctor.  All the docs on the BMT team take turns rounding up on the floor for a two-week stretch.  So every day we are not talking to Dr. S, although she visits him quite regularly.  She was actually the attending physician on the floor for the last couple of weeks, which was really nice.  On Thursday, a new doctor rotated on.  With his rotation, we have met every single doctor on the BMT team, as we have been here for nearly three months.  It’s actually nice knowing who all the key players are, but I digress.  Anyway, Dr. S happened to be “moonlighting” last night (meaning she was taking the night shift for one night) and popped in to see how we were doing.  She looked at Reece’s rash and said it looked much improved from Wed, which was her last day rounding on the floor.  She addressed several things that I had questions about in the long-term.  And…she told us she was fine with Reece going home for a few hours yesterday!  Had it not been completely inappropriate given the relationship, I would have kissed her!

So, we packed Reece up and made the 15 minute drive home.  It was somewhat strange to see him in his car seat.  I liken it to taking a newborn home; I felt paranoid about every little thing. We got on the highway and I told Terry the ride seemed really bumpy.  Then Reece broke his silence and said, “I don’t mind the bumps!”  We got him in the house and he walked to his room.  When he saw his bed he nearly ran over to it, almost falling down, and climbed up on top.  He sat on his bed and smiled.  Then he decided he wanted to rest on our puffy couch downstairs.  I made him mac and cheese (his choice) and he also ate a few bites of fresh strawberry.  As I was up in the kitchen I could hear Terry and Reece chatting on the couch about whatever they were watching.  It felt awesome to make him something to eat and to hear his voice drifting from parts of our home.  A month ago to the day, Reece had his hemorrhage and I remember thinking, “He may never get to go back to our house again.”  Having him in our home is a victory in and of itself.  Reece’s demeanor was so much more like himself.  He wasn’t running around and playing, but he was talkative and engaging.  He was ready to go back to the hospital after 90 minutes of being at home.  When we hooked him back up at the hospital his stats looked great!

My mom stayed overnight with Reece last night and he slept for periods of time, but also wanted to watch “Cars 2” (one of my least favorite movies) in the middle of the night.  Apparently, he was talking to my mom through the whole movie, discussing how he wanted to go back home, and sounding much more like himself.  Many people have stated that the home visits are so encouraging to the kids and it really motivates them to work hard in order to get home.  Reece is no exception to this.

Despite a small fever spike in the middle of the night, Reece is able to go home again for a few hours today!  It sounds like we will be in classes early this week to discuss caring for Reece’s line and administering insulin at home.  He will likely start subcutaneous (sub-cu) injections for his insulin (aka “pokes”) starting tomorrow, as we will need to do those at home.  He will transition tonight to get down to only 12 hours per day of nutrition through his line.  This is where we were at a month ago before Reece went down to the PICU.  No one is discussing the d-word, but everyone is preparing for it.  Don’t get too hepped up, yet, as we know to take it a day at a time.

With this latest progress and my feelings about Reece coming home I am realizing that while the doctors have their own milestones to go on–mostly noted by days post-transplant–we will clearly have our own milestones.  My milestones are much like that of any parent raising a child…firsts.  In this context, it’s his first WBC count, his first trip home…and I have many more that I am keeping in mind.

We covet your prayers for continued improvement in all things (including Reece’s GVHD rash), no fevers, no more complications, health and healing, remission, discharge, life.

Have a blessed Easter.  I’m celebrating Reece today and I’m celebrating a risen Savior.

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Home, Prayers, and Some Rambling

It’s been another good day for Reece.  We could use your prayer on a couple of things.  First, assuming all goes well today and tonight, he will be on pass to go home for a few hours tomorrow.  We really, REALLY want this to happen and I think it needs to happen for all of our mental health–but mostly, for Reece.  Please pray that he doesn’t have any fever spikes, that nothing new crops up, and for energy and well-feeling for him.  Also, please pray for his protection in leaving the hospital.  In the context of the immunosuppressed person, it is a scary, germy world out there.

The other prayer need we have is Reece’s GVHD rash.  He is on a high dose of steroids right now to try to control and rid him of this latest flare-up.  This second round is graded more severe than the first and, while he has responded to the medicine, his skin still appears “angry-looking”.  It is still red on parts of his face and chest.  If you look at him right now, he looks like someone who is peeling from a sunburn.  That is part of the natural process of replacing the skin after the rash starts leaving.  The new skin, however, appears red and it is difficult to tell if it is new, tender skin or if the GVHD isn’t responding well to the steroids.  The other considerations are that Reece needs quite a bit of insulin as a result of the steroids.  This means he will likely need insulin injections that will be managed at home.  The more concerning piece is that if the steroids can not get rid of the rash, they may opt to wipe out his T-cells in an effort to rid him of the GVHD.  This is possible to manage out-patient, although it would make him even more susceptible to infections.  Consequently, it puts him a greater risk and much more likely to be re-admitted to the hospital.  The rash was on the back burner while we were dealing with the hemorrhage complications.  Realistically, the rash is the long-term concern.  We need Reece’s body to start accepting his new blood.  We need the rash to leave permanently and the GVHD to leave him alone in all areas of his body.  Please consider all of these things as you lift him up in prayer.  Thanks to all for your steadfast commitment to keep Reece’s health in your prayers.

I decide to walk around Lake Harriet this morning before coming to the hospital.  It was a lovely, brisk morning and, for whatever reason, I was thinking about miracles.  Webster’s dictionary defines “miracle” as follows:

mir·a·cle/ˈmirikəl/

Noun:
  1. A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be divine.
  2. A highly improbable or extraordinary event, development, or accomplishment.

I have met people who are walking miracles.  I was also thinking about Reece in this context.  I believe he was a miracle baby, in that he survived his birth complications.  There was no rhyme or reason why he made it through all three different things that happened in utero (you can read about his birth story here).  I do not, however, believe he has been miraculously healed in any of this.  Don’t read that as me being ungrateful.  My gratitude for Reece’s healing measures on a level that I can’t put into words.  His healing, like many things in life, is by God’s grace.  My prayers have specifically been for miraculous outcomes–no side effects, doctors to not find anything despite warning signs, etc.  It’s my personal take that a miracle means you are inexplicably spared from something.  However, he has not been spared from his share of struggles with this.  He has walked this road, albeit not alone, but he has traveled this long journey.  He has been doing the same things up there that many kids have done before and many will do after him.  Nope, I can’t say that anything we have experience here, including his hemorrhage recovery, was in the miracle category.  He is a fighter and a survivor.

Fast forward several hours and I am staring at the food diary we are keeping for Reece on a daily basis.  He hasn’t been eating much, but he has been drinking 20-35 ounces of whole milk a day!  Meal-in-a-glass.  Additionally, he has not been taking lactaid and has been mostly stomach ache-free.  A critical piece in Reece’s diagnosis–in fact the whole reason I ever took him in to the doctor where they discovered his blood was off–was a stomachache.  The only thing that seemed to help with that was taking lactaid, so we assumed he was lactose intolerant.  He took lactaid up until he wasn’t eating in the hospital any longer.  Now, I am fairly certain that he is not lactose intolerant, considering the amount of dairy he is receiving without complaining of any stomach pain associated with the milk.  So, I stand corrected in regard to miracles.  The original stomach ache that brought us in for his diagnosis, I would consider miraculous.  It was God’s divine intervention at bringing his situation to light and avoiding further complications with his diagnosis.  There is no explanation for why he had those persistent pains and no way to describe the feelings of dread and worry I felt over–what–a stomach ache?  Doesn’t make sense, even for a worrier like me.  Additionally, every doctor we have discussed his diagnostic path with has said, “Thank goodness for the stomach ache.”  They have all consistently said that it is highly unusual to come to his diagnosis in that way and at such an early stage.  It was a good realization for me today to think about how had Reece not been given those tummy aches, we may have not even caught the disease at this point.  Or he could have been dealing with serious infections beforehand.  All the “what-ifs” pile up.  It was something worth mentioning in my day, so I am sharing it here.  I am constantly amazed as this situation unfolds.

Have a great weekend–we are hoping for the same!

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More Good Days

I love being able to post about Reece having good days.  I feel a little gun-shy in posting the positives in that when things seem to be going well, something weird happens.  So, proceed in reading with caution.  Nevertheless, we are celebrating awesome progress that Reece is making.

Reece’s breathing has greatly improved!  He has been off of oxygen altogether for a portion of yesterday and most of today.  He is still using a nasal cannula at night, but it is at a very low setting.  Other than a few mild fever spikes (two over the course of the week, to be exact) he has had normal temperatures.  His rash seems to be improving.  He had two great days with some major milestones.  He went outside yesterday for the first time in nearly three months!  He took a wagon ride with Terry and me–he didn’t say much, but I am sure it felt good to be out in the open air.  Additionally, during his physical therapy session this morning, he walked around the room playing a game unassisted!  His legs are very weak from being in bed for so many months, so I am impressed at how much he is able to do.  He is making progress and it is delightful to see!  His numbers look good today; his weight seems to be holding steady.  Anything can change, but today things look good.  Praise for all of it and we appreciate your continued prayers for health and healing of Reece, remission, life, and discharge.

A few days ago, my dear friend and I were discussing what is going on in regard to Reece’s health and the timing of our new baby.  She was sharing with me her heart and how, essentially, she assumed it was a stressful predicament to be in.  She was empathizing with me.  It was a brief discussion and I know where her heart is at, so it wasn’t offensive or taken in the wrong way.  Ultimately, I told her that the last thing I want to hear is that people are feeling sorry for us.  There is nothing to feel sorry about.  I love my life–every part of it.  It made me realize, however, that there are probably a lot of people feeling sorry for us.  If my closest friends are feeling that way, what are people thinking of us who barely know us or are reading this blog as mostly strangers?  The thought of people thinking we have an unfortunate lot in life makes me shudder.  I have never felt that way and the more I think about it, the more I know it isn’t unfortunate, because it feels purposeful.  Our life and our struggles are purposeful.  It doesn’t feel like we drew the short straw.  Certainly, I wish that Reece wasn’t struggling and that he could have avoided this illness.  But there is also the understanding that this was intended for him and, without it, he wouldn’t be able to fulfill his life’s purpose.  I am excited about life–our kids, our new baby, what lies ahead for us.  I have been able to see years worth of seemingly unrelated struggles and unanswered questions come together in a meaningful way through this circumstance and I am certain we have changed our life’s focus for the better.  I am sure it is hard to relate to our specific situation unless you have gone through something similar, but if you consider tough roads you’ve walked down, you know you can’t imagine your life without them.  My life makes no sense without Reece.  To wish for things to be different is to wish for him to not be a part of my life–it’s impossible.  It’s unfathomable.  I can not separate him from his current illness.  MDS doesn’t define him, but it will have a lifelong impact on him.  To imagine his life without it takes Reece completely out of the picture.  And it is only in the thought of never knowing my child, never birthing him, never meeting him, never experiencing life with him, that I would ever feel sorry for myself or for our family.  I would love to remove this situation from his life, but I know he was specially chosen to endure this hardship.  He will be delivered from this one way or another and it has a purpose.

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Good Days

My last post on Sunday left many things up in the air.  It turns out that (thankfully) there wasn’t much that they found with all of the oddities that transpired.  Reece was quite heavy with retaining fluid, which they feel contributed to some fluid leakage in the lungs.  They have no idea why his hemoglobin took a dramatic dip.  His echocardiogram revealed no fluid build-up around his heart.  They let him “rest” on high flow oxygen all day Sunday and throughout the night.  They also increased his diuretic to get some of the weight off.  All measures taken seemed to work and Reece had a great day yesterday.  His lungs sound clear again and he is breathing comfortably.  He had an odd spike in fever for roughly 20 minutes yesterday, but he has been close to afebrile for the last 48 hours.  Today, he did PT, OT, and a wagon ride/walk.  That is a busy day for him!  He is snoozing now and breathing more shallowly.  I suspect he is recovering from the movement of the day.

We need his weight to regulate, his breathing to improve to be able to get off oxygen, and his body to come back together.  He has been in good spirits overall and that has been awesome to see!  Thanks for your continued prayers.

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Developments

Reece had some things transpire overnight.  It seems that while his breathing stats looked good, there was enough of a concern with his rate of breathing and his soundness of sleeping to do a chest x-ray overnight.  It appears the lungs look a bit fuzzier–could be more fluid–and his heart has enlarged in the last two days.  His heart appeared slightly enlarged a couple of days ago, but it was not concerning.  As it turns out, a common side effect of transplant that usually occurs Day +60-100 is some fluid build-up around the heart.  They had a CT scan done around 9 am and will be looking to see what is going on with fluid.  Depending on whether or not there is fluid and the amount that they find, they may try to drain it off of his heart.

The fluid in the lungs is concerning, coupled with a very large drop in his hemoglobin overnight.  He appears to have some blood in his urine and stool as well.  He is back on high flow oxygen this morning at a slightly higher level than yesterday, although not much higher.  His respiratory rate is slightly higher than yesterday, although looking at him now, he appears to be sleeping comfortably.  He has a slight cough.  These things all happened prior to the first hemorrhage–that doesn’t mean it is happening again, but it is a concern.

He is carrying a lot of extra weight, which could be contributing to the heart issues and the breathing changes.

Prayer Requests:

  • Praise for no new fevers
  • No bleeding; no breathing issues; continued improvement in lungs; protection from infections
  • Heart to return back to normal; no fluid issues; quick resolution
  • Weight to start normalizing
  • Peace and comfort for Reece; recovery
  • Remission and life
  • Improvements in all things BMT (His white cells and neutrophils were up on their own today!  Score.)

As an added bonus to the day, our calling system to the nurse is broken so we are permanently changing rooms.  Sayonara to our original room here.

We’ll keep you posted.

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