Day +83, Improvement

“Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways acknowledge him,

and he will make your paths† straight.”

Proverbs 3:5-6

Trusting Gods hand in all that has happened and continues to happen has not been easy.  But I must say loudly, it has been the hand that has sustained both Clif, myself and our family through this almost 6 month stay at the City of Hope!  Do I think it is a City of Hope?  Absolutely!!!

Clif has been here in ICU for now 17 days, this is our 3rd stay in this unit.  I have seen amazing things here and I cannot say enough positive comments about the care and treatment received.  

Since the last update, 6 more liters of fluid off the abdomen and 754cc's of fluid off from around the heart and lung area.  He looks very good and is improving.  He complains of some chest pain, so I will ask for another ECCO just to confirm nothing is building up again around the heart.  I am told it is common to have this type of pain after draining like this occurs.

Physical Therapy and Occupational Therapy are back!  Memories are a little scrambled but some of the most recent ones of what he doesn't remember are worth the loss.  

The doctors collectively believe the fluid build up is caused from Graft vs Host.  In slang language; Clif has a 28 year old, untamed wild horse living in his barn.  The problem is everytime we think we get him harnessed and somewhat tamed, he busts out of his stall again and messes up the barn.  The graft is attacking the host!

Thank you again for continueing to pray us!

Day +76 & 77, Prayer

"He knows the way that I take,  when He has tested

me, I will come forth as gold."  

Job 23:10

Slow but sure progress has been the path for the last 10 days, however new pain has arisen,  uncertainty of its cause and many more tests and scans .  Yesterday, Clif was having terrible pain in his entire abdominal area, a procedure was performed by needle to remove fluids that were building up (3+ liters).  One of the complications for the last 6 weeks has been an irregularly large and distended abdomen.  

An ECCO was performed, CAT scan, Ultrasound and X-rays yesterday.  

Something I failed to mention on the last blog was that Clif was intubated when readmitted to ICU back on July 5th.  Fortunately, his kidneys have been strong and no dialysis was required.  July 11th, the intubation was removed! , the next day he asked for a bagel with peanut butter &  jelly and a piece of turkey on top, yes this is something he likes.  Although, unable to give this, we took babysteps and introduced popsicles and ice chips.  Slow progress was continueing.

So today, we wait expectantly on The Lord to reveal and prayerfully heal.  The next couple of days I am asking for very specific prayer;  to determine the cause of pain and to relieve it!  for all internal unknowns to be revealed & treatable and for continued forward progress.  

“Trust in Him at all times, you people;

Pour out your heart before Him;

God is a refuge for us.

PSALM 62 : 8 (NKJV)”

Day +70, ICU Stay #3

“May God be gracious to us and bless us

and make his face shine upon us.

Psalm 67:1

On the evening of July 4th Clif spiked a fever of 101.9 and was having a problem breathing.  Protocol on transplant patients is to order blood cultures when a fever exceeds 101.5.  This is a very good plan.  Because of this plan Clif was diagnosed very quickly with a blood infection called Gram Negative Bacteria which caused Sepsis.  There are many strains of this bacteria and treating it is not usually that easy.  He was actually diagnosed with 2 seperate strains. The antibiotics used are effectively treating and reducing the infection.  The origin of these bacterias is not exactly known; could be from the bowel, the picc line or the bed soar, for examples.

Early morning July 5th at 2am Clif was transfered to the ICU unit.   At about 3:45am he went unresponsive.  I am assured this was not cardiac arrest.  However, do to a very low to no pulse reading, CPR was administered.    

Since this event, Clif is improving.  He was never sedated but because of the toxicity of bacterias in his blood, it acts as a natural sedative and he is slowly coming out of it.  There is some fluid around the heart but they are not concerned and feel it is from the chest compression performed when the initial "Event" occured.  

Please continue to pray for his total recovery, again, Nothing is impossible with The Lord!

Day +63 & 64, Vaccination's, Enlarged Spleen & Rehabilitation

This week Clif was given 5 vaccinations, the exact same ones a brand new baby gets!  It's been 24 hours since injections were given and no allergic reactions have occured, good news.  More often, vaccinations are given at about 12 months post transplant.  The reason for early injection will be explained in more detail below.

Enlarged Spleen;  We mentioned last week that the ultrasound revealed an enlarged spleen.  We have discovered that his spleen began enlarging when Nuprigen was increased a few weeks ago to boost his White Blood Cell production.     Since this discovery, we are holding off as much as possible in using this drug.  It's still necessary at certain points when his counts are too low.  Remember, WBC's help fight infection and we still have the lung issue, aspergillus which is currently under control but we don't want that to become a problem.   Unfortunately, what they thought was a distended abdomen and excess fluid was also his spleen enlarging.  By the time we learned this, concerns started to mount of what the next step should be.  A Splenectomy is definitely a possibility in the future.  If indeed that should happen, Clif needed early vaccinations.  Our doctor is tilling the soil and preparing for what might possibly happen and being vaccinated is necessary.  We are 50/50 on whether the removal of the spleen will occur and if it does, Clif needs to get stronger.    

This has been a difficult week for both of us.  We were moving in the direction of a rehab hospital and hopes of coming home were in view.  When the recent findings of the ultrasound took us to such disappointing news, neither one of us were prepared to deal with this.  We still do not know the path of treatment we will be taking.  We are waiting and trusting the wisdom of the team of drs and surgeons on our case.

Rehabilitation continues;  although not able to stand on his own, Clif works diligently and daily at strengthening his entire body.  

“Because you are my help,

I sing in the shadow of your wings.

My soul clings to you;

your right hand upholds me.”

Psalm 63:7-8