Thank God For Transplantation

As you are aware, Hadassah had congestive heart failure in late August and was later diagnosed with serious dilated cardiomyopathy. She has been in and out of the hospital ever since while we tried to find some stability for this life-long disease. Yesterday, they did a cardio catheter procedure to measure the pressure in each of her heart chambers (and lungs) and to check those pressures response to various drugs. Unfortunately, they found the pressures to be very, very high. Thankfully, they did find a combination of three drugs that reduced the pressure sufficiently for the time being and she is currently back in the Pediatric Cardiology ICU. At this point, Hadassah is at what they call “end stage cardiomyopathy” and the only option left for her is a heart transplant. Today, we plan to put her on the waiting list and pray for a short waiting period. It appears that she may need to stay in the hospital until a new heart is available. Because of her blood type (2nd best to have for this), her age, the size of her heart and the fact that her listing status is the highest possible, doctors estimate that the wait could be 1-2 months, though no one really knows, of course, but God.

We thank God for the great medical advances made in this century and for the top-notch doctors and hospitals available to us - knowing that if we lived a few decades ago or even now in a different place, we would be despairing of her very life.

Please keep Hadassah and us all in your prayers in the coming months. This is obviously a difficult thing for anyone to accept and is extra difficult for an 11-year-old. Pray that the peace of God that really does surpass all understanding will guard our hearts and minds through Christ Jesus. (Phil. 4:7) Pray that when we go through the valley of the shadow of death, we will fear no evil, that God will then be with us, that with his rod and his staff, He will comfort us. (Psalm 23:4)

Cardio Catheter

Hadassah's cardio catheter began at 10:45 this morning and should take a couple of hours to complete.  Please pray for skill and wisdom for the doctors, that all will go smoothly and that the results will bring joy to our hearts.

Meet Tweet and Perch

Hadassah and I both agreed that a study of birds (our current Science subject) necessitated having actual birds to observe.

Verse For The Day

"Come unto Me, all you who labor and are heavy laden, and I will give you rest."   Matthew 11:28

Hadassah Is Home!

It's official.  Hadassah is home!  Please join us in thanking our good Lord for this gift.

Hoping To Go Home For A Week

It is our hope today that Hadassah will be able to come home for one week.  Last night, Hadassah moved back to ICU in order to take her off the IV medicine.  They do not want her on this medicine when they do a procedure next week to measure the pressures in her heart and provide other information needed to evaluate her condition.  Next Wednesday, she is scheduled to be re-admitted for this.

For those of you who tried to call since Monday afternoon, I am sorry that her phone broke.  And the phone is not working in her new room either!  NY Presbyterian has amazing technology in the medicine realm but seems to lack it in communications.  The internet was usually down too.

Please keep praying for Hadassah and for us all.  Short of a miracle, this is not something that will go away with the next hospital visit.

I've always loved Psalter 203. I still do:

In sweet communion, Lord, with Thee

I constantly abide;

My hand Thou holdest in Thy own

To keep me near Thy side.

Thy counsel through my earthly way

Shall guide me and control,

And then to glory afterward

Thou wilt receive my soul.

Whom have I, Lord, in heav'n but Thee,

To whom my tho'ts aspire?

And, having Thee, on earth is nought

That I can yet desire.

Tho' flesh and heart should faint and fail,

The Lord will ever be

The strength and portion of my heart,

My God eternally.

Visiting

Yesterday, we took Josiah and Shifrah to the hospital to see Hadassah. It was a happy 30 minutes together as a family.

Josiah and Shifrah enjoyed looking out the big window down onto the busy New York street below.

And Josiah coulnd't get enough of riding Hadassah's bed up and down and up and down.

Prayer Is The Best Medicine

We've had a quiet weekend of just being monitored on the medicine.  Hadassah needs to be watched for five days on it before she would be allowed home.  That would keep us here until at least Tuesday night but there is more going on than just the medicine so her discharge is yet uncertain.  The "more" includes a possible procedure to check the pressures in her heart and lungs as well as discussions regarding a more long-term plan.  This is an unpredictable and complex disease with no easy quick fix.

We are thankful that in the middle of this difficult and uncertain time that we have a Savior who is near us and cares for us.  We ask that you will plead with him on our behalf :

• for a miraculous healing.  (Why not ask?  We know He can.)
• for Hadassah's physical comfort and inner peace.  And sleep!
• for wisdom for the doctors but also for Paul and myself as we are faced with difficult decisions.
• for daily strengh for all of us.  This is quite exhausting.
• for Josiah and Shifrah who have been such troopers in all of this but we know it hard on them.

And thank Him too for thus far keeping us "in the palm of His hands."

Hadassah Has A Phone Number

This afternoon, Hadassah was moved out of the ICU and onto the Pediatric Cardiology Ward.  But, it's too bad we no longer have a private room and Paul tells me that he's not sure what he'll be sleeping on tonight.  Ugh!  The good news, though, is that we no longer have a broken phone and you can call Hadassah.  She'd love to hear from you.  She's always been so totally cheered by phone calls.  Call 212 342 4307 .

PICC Line

Yesterday, Hadassah received a PICC line.  A PICC line is basically a more permanent and more stable IV line.  It is about a foot long and reaches to just above her heart.  They can draw blood from it and they can give her medicine through it.  It was very nice this morning to wake up at 4 a.m. to find the nurse quietly drawing blood from it without the usual IV team barge-in, wake up and prick her routine that we have otherwise experienced.

The reason she needs a PICC line is because she now needs this medicine for a longer period of time and with a PICC line, she can continue to receive it at home.  Unfortunately, the reason she needs the drug is because her heart has regressed somewhat and there is pressure building up in her lungs.

Please keep praying for her.  Her spirits are down and she wants to go home.  Please pray for her condition to improve and pray that she will be able to face her future with courage in the Lord.  We know that He can and will give us what we need in our time of trouble.

"Be of good courage, and He shall strengthen your heart, all you who hope in the LORD."  Psalm 31:24

Hadassah Is In The Hospital

Some of you are aware of Hadassah’s recent struggles with breathing, some pain in her side and chest and her general fatigue which has made most activities not worth her effort lately. Her heart rate is also higher and a blood test that measures the degree of heart failure has risen these past few weeks.

The doctors are not sure if all these things are happening because of her heart condition, because of a cold she can’t seem to shake or because of something else.  So, yesterday, they decided to admit her to New York Presbyterian Hospital again in order to receive a certain medicine by IV.  This is the same drug she received when her heart failure was first discovered in August.  The drug takes a day or two to kick in so we expect her to stay for just a few days, if all goes well.

So, here we are.  She was admitted tonight and she is currently getting all hooked up.  She is in great spirits for some unknown reason and doesn't look anything like a cardiac ICU patient.
.

Please remember Hadassah and our family in your prayers.  I continue to be amazed by the blessing of the unbelievable doctors and hospitals that God has made available to us.  There are so many others not near so blessed.

Cain and Abel

I guess if I was going to pick my kids' favorite Bible story, I might not have picked a murder story.  But, somehow, Shifrah latched onto the Cain and Abel story and this little "ditty" by Jamie Soles. 

(Check out the words below the video.  And don't laugh at my video skills.  I was holding Shifrah on my hip and couldn't see the screen!)

Cain & Abel sitting at the table-one was happy and the other was mad.

Abel made a sacrifice pleasing to the Lord but Cain's was very bad.

The Lord said, "Cain, what's the matter with you?

If you do what's right, I'll be happy with you."

But, Cain wouldn't listen.  He just frowned

And he spilled his brother's blood on the ground.

Cain was a murderer and so are you

if you hate your brother in the heart, it's true.

So, be like Abel who trusted the Lord

and not like a man named Cain.

Our 24-Hour Fish

Yesterday, on a whim, we ended up with three new pets.  But, we are not known for our success with pets. . .

 Nor for keeping them in their cages . . .

Where's Shifrah?

Found her at last.  Fast asleep under my desk. 

So, What Have We Been Up To Lately?

For a nature walk, we gave Shifrah her own magnifying glass.  It kept her occupied and even better, made her stop running every once in a while.  Here she inspects a rock:

For an apple-themed Storytime, Shifrah "made" her own little apple pie.  She was so proud of it that at first she wouldn't let us cut into it.  Then, she finally let us have some but refused to eat it herself.

Soccer is over now, but Josiah played hard 'til the end.

Hadassah and her friend, Andrea, had lots of fun with duct tape, an old crate and their scooters.

Last week, Aunt Helen gave Josiah a Revolutionary War play rifle.  Is there a better gift for this kid?

Yesterday, we enjoyed a baked pasta dish for lunch - thanks to the great efforts of Mady and Hadassah.