Friday, May 30, 2014

Day +30 & 31, Moving On Up!

We have moved from ICU to the 4th floor, Hallelujah!  This is Great News.  We are on the cautious Road To Recovery!

Clif continues to make forward progress.  The catheter in the right leg artery has been removed because his kidney function is returning to safe and normal levels.  The last 4 days of physical therapy, occupational therapy and speech therapy have been helpful.  He is determined to recapture his lost strength.  On Sunday, he couldn't lift his hands; today he extends them high into the sky.  His legs are cooperating (unable to stand), but I am hopeful that is only a matter of time.  

DNA testing was done Thursday and results will be available this Monday.  We are looking to see the percentage of occupancy of our donor and the residual occupancy of what is left of Clif's original DNA.  Exciting and sad all at the same time.  The car is the same but the type of oil has been changed and upgraded to a new (German) quality.  Sporty sounding isn't it?  

Clif has missed some momentus occasions in our family life during his 4 month stay, but I am hopeful he will get to participate in seeing our oldest son Charlie graduate from Foothill High School on June 18th, so please, that is a big selfish prayer request on my part.  I am also looking forward to he and I taking our son to ASU Polytechnic this August. Good goals to look forward too. 

“Hear, O LORD, and be merciful to me;
O LORD, be my help.”
You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing to you and not be silent.
O LORD my God, I will give you thanks forever.”

Psalm 30:10-12

Monday, May 26, 2014

Day +27 Post Transplant, A Good Miss

Remember the previous days Dialysis Machine Mishaps???  What appears as a big problem, turned out to be a Big Blessing.  The machine has been left off now for about 24 hours and Clif is making his own Pee Pee!  Simple as that.  The catheter should be removed today, hopefully.  Big Praise God!

Clif is anxious to get going on physical therapy.  I worked his legs, feet and arms a couple of times yesterday and will increase as the days go forward.  He will formally start therapy on Tuesday.  Clif's physical condition is extremely week.  He has no muscle mass in his legs, we will turn that around as quickly as possible.

He remains stable & calm.  His vitals are good and he is now off the levophed for increase to bp.  So this past week we have seen three drugs removed; versed (sedation), fentanyl and now levophed.  The vent is out, he remains off dialysis  and is making 100cc's of pee every hour, a very good number.  He again has not had a fever.  He is swelling a little due to 3 bags of blood yesterday and possibly the transition of the kidney function.  His breathing is good and steady.  Clif took one shot of pain med last night, his bottom is very sore and took an Ambien to sleep (which he did).

WBC 3.4, HGB 7.6, PLT 20  (I forgot to get the creatanine level)

The Creatanine is important it tells you how the kidneys are doing.  A miss on my part.  The catheter in his right leg artery has not been removed, since his platelets are still a little low, I know that will be discussed first thing and quite possibly may be gone by the time I  arrive.

Happy Memorial Day!

“Wait for the LORD;”“be strong and take heart
and wait for the LORD.”

Psalm 27:14

Saturday, May 24, 2014

Day +25/26, Post Transplant, A Picture Is Worth A Thousand Words

God is Good   No He is Great!

The Ventilator was successfully and effortlessly removed at 9:30am Saturday morning.  It was a part of his life for more than 2 weeks.  Since removal, he continues to breath on his own with no problem.  He has had a great attitude all day, even though very tired.  

Currently, the two biggest hurdles are; lungs & kidneys.  Saturdays WBC count of 15.3, it is most likely  reflective of infection due to the C Diff in the intestines, the aspergillus in the lungs and the injured  kidneys.  The increased cell count continues to reveal something is amiss within.  Clif is already taking 2 or 3 antibiotics, so whatever is cooking we are on it.  The cells are also going to the front line to give assistance.  We will continue to fight.

I continue to ask for no visitors.   Immediate family will see him Sunday, but visits will be brief.  Doctors would like to maintain no visitors for at least the next 5 days through Friday May 30th.  He is very weak and very tired.  When with him in the room, the monitors tell a constantly changing story.  The heart rate, oxygenation, blood pressure and breathing stats are the indicators looked at for stress patterns. If they move to any dangerous levels brave me is running for the hills.

This mornings call, Sunday  5/25 revealed lower blood counts, but still fairly good.   The dialysis machine may be the root cause of some of his count reductions.  At this point I am skeptical if there is equipment failure or does Clif move around too much.  The  filter changes needed 3 times in the night, were a very long process.    When changed,  good  amounts of his blood is lost, very concerning.  His HGB count today is 6.3 down from yesterdays 8.2.  That count reduction is most likely the result of the dialysis filtering issue.  If Clif makes the slightes moves of his right leg, it creates differing pressure issues to the catheter and these types of issues arise.  It is difficult, we will be discussing reinserting a new catheter line, if safe.  Yes, I will be speaking long and hard with the doctors on this issue.  Otherwise, his evening showed no fever and a continueing calm and non agitated Clif.  His vitals are stable and his blood pressure is still on the lower side.  His WBC is 6.4 and Platelets are 18.  All sedation and all pain medication is turned off, two less drugs in his system!!!

“Though the mountains be shaken
and the hills be removed,
yet my unfailing love for you will not be shaken
nor my covenant of peace be removed,”
says the LORD, who has compassion on you.”

Isaiah 54:10

Happy Memorial Weekend, thank you for thinking and praying for Clif!

Thursday, May 22, 2014

Day +23 Post Transplant, The Weening Continues

Today has been a good day!

I continue to wave the banner of caution, however, when blessings come it is necessary to share them.

After the earlier blog posting today, we received some disappointing news from the night nurse.  At 12:40am Clif's heart rate made another sudden drop.  This prompted the doctor on the night shift to have the nurse get forms ready for me to sign to allow for a pace maker installation.  I arrived this morning at COH, heavy hearted knowing what was awaiting.   Fortunately, God provided a way out.   I ran into the cardiologist getting off the elevator, we both arrived at the same time, I mentioned the above information and asked if there were any possible safe ways to avoid the device, he said, let me go back and check him out.  I remained in the waiting area for about 10 minutes then went back to his room in ICU and met up with the cardiologist again.  His first words were;  No Pace Maker!  The low Electrolytes and high Potassium Levels he feels were causing the sudden drops in the heart rate.  All was immediately adjusted and Clif has remained consistent.

With his WBC jumping into the 14.6 range, the first thought is.......... infection.  New antibiotics are presented and others discontinued.  Todays counts also include a stealthy HGB of 10.3 and  PLT's of 27.   He remains on .5 of Levophed to increase bp.  

Now for the good news, Clif has been breathing on his own (yet with the vent still in place) since 10:30am this morning, 5/22/2014.  He has been fairly alert and answering some questions with a nod or a squeeze.  The Versed sedation has been reduced to 1.6 and the Fentanyl pain drip should be to zero by tomorrow morning.  

Because we have reached such a delicate time in reducing meds to get him off the vent, I must stress that we are restricting all visitors for the next 2 days (5/23-5/24).  Clif is coming off some serious drugs, keeping him calm and non-agitated is a must.  Determining if delirium and hallucinations exist will be monitored closely.   Today he was seeing things on the walls, I assured him what was real and what was meds playing tricks on his brain, but still, he has to be talked through it to believe what is and isn't real.  

Attempts to remove the intubation should be happening tomorrow, God willing.  It's a very tricky process to eliminate the vent while still somewhat sedated and having a catheter in the artery of his right leg.  The slightest movements to the catheterized leg causes the dialysis machine to ring out loudly.  If Clif does not do this slowly and patiently they will increase sedation and continue at another time when he can better handle it.  

Please pray for continued positive results.

“Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”

Hebrews 4:16

PS.  This morning @ 5:39am on 5/23, Clif had another calm and uneventful night.  WBC 8.6, HGB 8.6, PLT 31.  Praise God!

Day +23 Post Transplant, Efforts to Ween

It's been 2 full weeks in ICU now, and the graft from our donor has taken.  Clif's WBC count yesterday was 6.3 (thats normal range) oxygenation is 100%, platelets are 23 and his hemoglobin was 9.7.  The WBC and hemoglobin counts are very strong indicators that our German donors dna has grafted and not rejected.  

Currently, attempts are being made to reduce sedation and bring him slowly and gently out of his deep sleep.  The sedation level for most of his stay has been set at level 6, today it is at level 2.  The type of sedation Versed is one that takes a while to work its way out of the system.  The Respiration settings are being gently manipulated to allow Clif to exercise his diaphragm, not only is his body week, but his respiratory system is week as well.   The Respiration Machine was adjusted such that he was breathing on his own for 4 hours, it was than reset back to the assisted 12 breaths per minute and later adjusted down to 8 breaths per minute.  I am told this is like a gentle workout on the lungs.

During this time Clif has been opening his eyes, responding to commands to wiggle his toes or squeeze hands.  He has clearly communicated he is in no pain.  

His heart rate has been tackicardic (spontaneously fluctuating between 110-120) sinus rhythm is what we want.  He does have good periods of time where his heart rate slows to a normal pace.  But, he also has had 2 incidences where for a short period of one minute it dropped below a safe number.  For this reason the cardiologist on our team has set up a sort of external pace maker (a small leather pad about 6" in size that lays ontop of his chest) to monitor his heart while we continue attempts toward removal of intubation tube.  This is a safety measure to keep a very close eye on the heart activity.  They believe this inconsistant activity in the heart rate has occurred due to unbalanced electrolites caused by dialysis.  The electrolites are measured daily and watched closely as well.

The kidneys have not been inviited to ween yet.  I will keep you posted.

Because Clifs blood counts are in a range that is safe for him, some visitors have been allowed to come in his room.  Currently, anyone who enters is required to wear a yellow robe, mask and gloves due to previous C Diff diagnosis, a bacteria in the intestinal system.  For the duratioin of his stay, all guests will be required to suit up.   Dr Snyder our head oncologist/hemotologist shared this because It's a vey transferable bacteria for low immune persons.   I do ask that all visitors check in with me before coming.  Some stimulation is good, too much can be dangerous to him.

Thank you all for your prayers.

“Even though I walk
THROUGH the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me."

Psalm 23:4  (Day 23) 

"Please note, I emphasize the word through, because we are not called to stay in the valley but to walk through the valley."

Sunday, May 18, 2014

Day +19 Post Transplant, Still in ICU

Good Morning,

The last few days have had there ups and downs.  The theory in medicine here is to project the next move before the play is made.  There is no waiting, if they suspect something might be brewing they move before the volcano erupts.  It is quite encouraging.  Clif is holding on, bravely and with good color.  He is responsive when asked to wiggle his toes or if he has pain.  He recognizes me and knods his head or squeezes my hand to answer my questions.  He is critically stable.

Clinical Update;

WBC 4.8, HGB 9.3, PLT 15
Fever maxed at 38 or 100.8
Heart rate is in the 110-120 range
They are giving him extra fluids but not taking extra fluids off him.
Gave him some extra pain meds in the night, felt he was breathing faster.  The nurse said his eyes were wide open and alert so she increased his sedation from 5 to 6.  He is at .60 on the fentanyl.

Emotional Update;

We went into this knowing great difficulty awaited us.  Clif is in the valley of this entire affliction.  Keeping him encouraged is my job;  praying, reading and singing & listening to music, reiterating over and over where he is, the day of transplant he has achieved, his vitals and all the good things to remind him to continue to fight the good fight!

It has been 8 days today that he has been on intubation and 7 days of dialysis.

The kids have been a great source of strength for me.  They intercede in daily living needs along with the droves of friends and family who have brought dinners and snacks throughout the months.

“May the words of my mouth and the meditation of my heart be pleasing in your sight,
O LORD, my Rock and my Redeemer.”

Psalm 19:14  (Day 19)

Wednesday, May 14, 2014

Day +15 Post Transplant, The Soldiers Arrive In Force

The BATTLE is at hand,  Prayer is our plea!

To date;  two words clinically describe our health condition;  Critically Stable

The graft has taken.  His WBC or I prefer to call them the soldiers have arrived in force and plenty and are setting up camp to go to the battle front for him.  He has fought an amazing battle and I am weary on the sidelines.  I just keep praying Clif keeps his feet firmly grounded and holding on.

Clif is stable, resting peacefully.  Creatanine is 1.68, WBC 3.3, platelets 13 (recvd a bag this morning 5/13), hemoglobin 8.8, vitals are good.

We are praying fearfully for Gods will to be in harmony with my/our hearts desire.  It has been a one week stay in  ICU and there has been improvement.  I was told they would be working slowly and gently with his kidneys and a bronchial lavage took place yesterday and showed clear fluid with no yellow or green color, this is good.  They also took cultures of the fluid to ensure nothing else is in there.  

To date, everything within him is reversible and there is hope.  These next 5 days require much prayer  on our part and much perseverance on his.

Specifics to pray for;  Upper respiratory to be protected while he is on his back and fluids have the opportunity to creep down his throat and camp, for his kidneys to heal completely from the drugs that have injured them, for his strength to be equal to his battle, for me to maintain my sanity and remain very near to The Lord, He is my stronghold through all of this.  For my kids, that their emotional, mental, spiritual and physical needs are being met and overall that we are hemmed in both before and behind.  We know His grace is sufficient for us. 

Not that Clifs battle should be compared to JOB in scripture, but from where I sit, the following scripture is very suitable;

“Though he slay me, yet will I hope in Him;
I will surely defend my ways to his face.
Indeed, this will turn out for my deliverance,
for no godless man would dare come before Him!

Job 13:15-16

Monday, May 12, 2014

Day+12, Post Transplant, Ain't No Mountain High Enough!

Psalm 18:2 The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold.

Todays White Blood Cell (WBC) count is 2.4 (that deserves a big shout out) and  his hemoglobin is 9.8.  Doctors did stimulate the WBC growth with a bit of Nuprigen because we've got some other complications.

ICU.  We have been back on the 3rd floor since Wednesday.  Today is Sunday May 11th and Clif has just successfully and unfortunately been placed on Intubation and Dialysis.  This has actually reduced my emotional stress load, seeing him struggle while breathing and experiencing delirium was tough.  This is needed because the kidneys again are not up to par.  Other complications include; Distended Abdomen; this is caused from the chemo upsetting and stripping the entire intestinal system, causing it to swell and hold fluid.  Basically, the mucous lining throughout the instestines is gone, expected, but gone.  It has caused great pain, inflamation, burning, swelling and a host of other difficulties.

Clif is resting very peacefully now.   Another 3-5 day stay to allow the kidneys to rest again, and hopefully allow other things internally to heal.

Again, transplant has no real symmetry.  It does what it will.  Clif and I went into this knowing difficulty was ahead.  Many thought the toughest difficulties were behind, let me tell you......They were wrong.   I have never seen someone work so hard at recovery as I have seen in this affliction.

Please pray that this setback can be conquered in the next few days, that his new white blood cells become a strong ally in his fight against all the complications, that his kidneys do what they did in February and heal mightly, for his other organs to remain strong, for the swelling and inflamation to reduce as expected by this stay in ICU.  Yes, we have mountains to climb, but nothing is impossible with The Lord.

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.”
MATTHEW 11 : 28 – 29”

Thursday, May 8, 2014

Day+9 Post Transplant, Confusion

Yesterday was a difficult day.

Clif is experiencing some serious delusion.

His brain is adversly influenced and there is much confusion.  When taking grafting drugs, toxicity can take place and adding, reducing and even taking away drugs takes place.

Clifs kidneys, are experience a bit of distress, with the body producing to high of a creatinine level, blend that with the high level of grafting drugs, his mind has literally been taken to a place called delirium.  He also has a bacteria in his intestines which is being treated with antibiotics.  They have changed him from Dilauded to Phentynol pain control because the new one is more friendly on the mind in his circumstance.

Yesterday Clif became a difficult patient, it was all driven by drugs and all currently is still treatable.  He is downstairs as I write having a CT on his abdomen, please pray those results come back favorable.

The issues are being addressed very quickly and it will take a few days for his system to flush everything out.

Specifically, please pray for his kidneys.  They would rather treat the kidneys with drugs to level him out as opposed to dialysis.  Dialysis is still a possibility, that the bacteria in his intestines can be resolved, for the blood count levels of concern can be balanced, for the dilirium to reduce quickly, that the white blood cells return quickly (this will help him recover much quicker).

Thank you all for praying.

Monday, May 5, 2014

Day +5 Post Transplant

Hello fellow blog watchers.  Writing is not easy, sending updates routinely takes creative discipline which I find quite challenging.

These last 2 or 3 days have been days of not knowing if symptoms are normal or not.  Everyone responds differently to transplant, there is no specific list of absolutes when it comes to symptoms.  

Communicating with nurses moreso than with doctors has been stretching and has required much prayer on my own part.  Typicallly, the nurses work 3 days max with a patient and rotate, they begin the cycle again and eventually we see many of the same nurses.  We don't always see things the same; although there point of view is more clinical and it should be, this person in their care is very near and dear to my heart and wanting and expecting only the very best care is my goal.  Discerning that and keeping my mind focused on asking the right questions at moments of concern is something I pray for daily and I ask that you pray that for me as well.

We have had thus far a very trusting and comforting experience here at City of Hope.

There continues to be no rash, no fever, no nausea, vitals like blood pressure are good and stable, oxygen saturation is good and weight has been remaining steady.

Clif has experienced: swelling so they give lasix, problem urinating so they catheterize, pressure in the lower abdomen, while the plumbing in the back is working just fine.......many drugs are given to try to control out put.  Intake and outake of fluids and foods is very carefully and precisely measured.  He is on a drip program for pain with the option every 30 minutes to push for more pain medication.  Many of the drugs he takes for Graft vs Host (GVH) causes dilerium, now add pain medication on top of that and Clif has mild hallucinations (doctors say this will pass as meds are adjusted).  It is all expected yet each case is different.  Because each case is different, you have no template, no history of what to absolutely expect.  This is very foreign territory.  I do not like being in this mental place of uncertainty.  

For those of you looking for a projection or timeframe of when Clif should be more stable and out of the red zone, heres my best guestimate;  from day of transplant April 29th,  2-3 weeks of up and down unknowns and God willing we may arrive at calmer seas.

We have and continue to receive excellent medical care.  The team of doctors we have and who give deep insight and decision making into Clifs future health are experts!  I do not doubt at all that we are right where we are suppose to be.

Forecasting accurately and not knowing what will happen next are stark contrasts, although we may be uncertain of the next step, we are certain that God does and we rest.  We are not uncertain of God we are just uncertain of what He is going to do next. (excerpt from My Utmost For His Highest)

"We live by faith, not by sight"    2Corinthians 5:7

Thursday, May 1, 2014

Day +2 Post Transplant

This is really the dialing in phase.

So many drugs at doses that will need to be adjusted one day at a time.  The graft vs host (gvh)drugs being the biggest initial adjustments.  The 2 GVH drugs that began last weekend, pre transplant, started some minor twitches that became mild to moderate tremors.  As they have reduced the dosages, the symptoms have improved, they are still there but at a much lessor frequency & strength.

Last night and today were not necessarily days of rest.  Clif is in need of pain medication again to help ease the discomfort of his burning urination, lower abdominal cramping and other creative things that I will leave to your imagination.  Pain relief is given very liberally at this point of treatment.  The chemo really takes a toll on the gastrointestinal system.

Clif has been in bed all day, no walks today.  Tired, pain and no energy.  He continues to need platelets, but.......his hemoglobin for the past 2 days has been 9.5 which has not required a blood transfusion. His white blood cell (WBC) count is 0.1 (neutropenic), which we are told to expect this for another couple of weeks.  His platelets are also very low at 11, so he still needs platelets.

His desire to eat has lessened significantly.  Cream of Wheat seems to be a favorite right now, as well as PB&J sandwiches and misc. soups and crackers with peanut butter.  Dairy is not friendly to the gastrointestinal track either, good bye cereal for awhile.  Clif has not drank a diet coke in over 3 months, and I don't think he misses it.  Water has pretty much been his only drink.

Thank you for your constant encouragement, prayers and donations of blood and platelets.

“Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?”
LUKE 12 : 25 – 26”