Monday, December 26, 2011

All is Well

All is well.

My "Christian's" ankle bleed has finally resolved, a month later.  We have enjoyed our Christmas and are looking forward to the New Year as we begin with an inhibitor titer of 13!  The possibility of immune tolerance is actually within reach!

I hope that you are well, enjoying the holiday season and are looking forward to what 2012 may bring.

Blessings to you,

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Sunday, December 18, 2011

The Best Thing We Ever Did

I took "Lance" and "Christian" to the HTC in Denver this past week.

It was the best use of time and money I have ever put out.  My husband and I decided that the boys, especially Christian, needed another consult/opinion since our HTC in Albuquerque in undergoing many transitions right now.  With this inhibitor, Christian needs to be followed closely, so we finally were able to get up to Denver.

I have been involved with three previous HTC's since Lance was diagnosed and this I can't begin to tell you how amazing this visit was.  Complete, thorough, not rushed for time, beyond professional...and warm and welcoming.

Christian was fitted for a new brace for his ankle, and the Physical Therapist, Sharon Funk, was incredible!  I learned so much during the PT portion that it was almost overwhelming.

The amazing part of this trip is that Christian's inhibitor was tested.  The last time it was in the mid 40' it is…13!  I could hardly believe it!  Lucky 13!

I know that the "number" is not the most important part of dealing with an inhibitor, because it can consume you when the level goes up.  But you know what, we are celebrating!

This inhibitor battle began in 2006.  It's been a long haul, and it may continue to be quite some time before we get to "0", but it's the little successes that keep you going.

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Sunday, December 11, 2011

Big Improvements

It's so nice to see my "Christian" walking again.  He is turning in his ankle quite a bit and is moving pretty slow, but he is managing to get where he needs to go (but resting on his own as well).  He actually was able to put his tennis shoe on today!

It's the little things that mean a lot when healing from a bleed.

We go this week to Denver for a consult.  I am excited and nervous at the same time.  This has been a few months overdue.  I just hope we can get there without problems with the weather:)

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Tuesday, December 6, 2011

Lucky Eleven!

Day eleven and my "Christian" is on his way home!

He took a few steps today, is on NovoSeven every 4 hours for a few more days and oral morphine every 6 hours.

Much progress has been made.

Tonight will be the first time my family has been all together at home in eleven, very long days.

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Sunday, December 4, 2011

Day Eight

"Christian" had a really good yesterday.  He was able to take a good bath (he was getting really ripe) played with his trucks (surrounded by them in his bed) and ate fairly well.  The big news is that he pooped!  Whoo Hoo!   Now, if we can only get him to put a little pressure on his foot…

Today he will be off the continuous infusion of morphine and move to oral morphine.  The only problem last night was that his oxygen dipped down into the 70's so they put his nasal cannula back on.  The hope is that he is discharged Monday or Tuesday.

I am so glad we received our Cryo-Cuff!  Our homecare sent one to us, here at the hospital, and I am putting it on him regularly to help speed along this last part of his recovery.  It's a great device to have on hand.  Talk to your homecare about obtaining one.  Insurance may pay for it, but if not, it is well worth the investment.

The best part of today is that his dad and brother will be here later!  We have missed them terribly.

The waiting, and healing, continues...

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Friday, December 2, 2011

Day Six

We are in day six of our hospital stay and there is finally a glimmer of hope.  "Christian" extended his leg almost completely!  His ankle is still swollen but it finally seems to be improving.  He is starting to eat but the continuous morphine is still running.  The doctor backed off on it a little bit last night and I am hoping tomorrow they will consider backing off some more.  This morphine causes crazy itching!  Christian is scratching himself and leaving marks on his little body.  He has been on a regular schedule of Vistaril to help alleviate the itching but I went out to Walgreens today and bought some Aveeno anti-itch cream.  It has worked beautifully!  Great stuff :)

This has been the worst bleed we have encountered.  Seeing your child in pain is heart breaking.  It was to the point where I did not think he would ever get any relief.  Feeling helpless is awful.  It's enough to take away your self esteem and begin to doubt what you know about caring for your child.

That's when you have to dig down deep and have faith.

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