Tuesday, November 29, 2011

Still Here

We are still in the hospital.  "Christian's" ankle bleed is not resolved and he is still in a great deal of pain.  He is on a continuous infusion of morphine and a 3 mg dose of NovoSeven every three hours.  He's only had three bites of cereal (very early this morning) in a few days.

I am really worried about him.  He even has oxygen running by his face because his oxygen levels tend to go down on the morphine. 

I am taking "Lance" to the airport this morning so that he can be with our family for his grandmother's viewing and funeral.  I have to make sure Christian is healing.  That is what my mother-in-law would have insisted I do.

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Sunday, November 27, 2011

A Doozie

This ankle bleed has been one of the worst yet.  "Christian" has been on morphine every two hours today and with the half life of the morphine being so short, his pain goes away for a very brief time then he is moaning in pain until his next dose.

I hate that I can't take his pain away.

The swelling is not going down as much as I would like to see.  This blasted inhibitor does not make these things any easier.  I think tomorrow we need to talk about trying a dose of FEIBA. 

I just can't miss the funeral on Wednesday...but things are not looking like my little guy will be able to travel.

A lot can happen overnight.  I am trying to stay positive.
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Saturday, November 26, 2011

Never a Good Time

Bleeds never happen at very good times.

When you are walking out the door….

On test day….

Right after you tell the HTC there have been no bleeds for months…

2 am…

Last night, my "Christian" started complaining that his ankle was hurting, sure enough the entire night was filled with pain and constant infusing.

Then we got one of those phone calls that haunt you forever...word that my mother-in-law passed away.

Life goes on.  Bleed or no bleed.  It just what we have to deal with.

There's no sense getting upset about a bleed...we just have to treat the bleed and deal with the other stuff around us as it comes (not always as easy as that just sounded).

My mother-in-law adored my children.  She wasn't scared of hemophilia.  She embraced it.  She saw past the bleeding disorder and looked directly into the souls of my children and loved them like only a grandparent can love a grandchild.  They are going to miss her hugs and visits...and suitcase surprises. 

I miss her terribly already.

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Tuesday, November 22, 2011

Appointment is Set!

I made a few calls, talked to someone I knew at the Denver HTC and we have an appointment for "Christian" on December 14th. I am so relieved that he will be seen sooner rather than later. He is having a bleed in his hand that is taking some time to heal, but his ankle is doing much better.

His wheelchair sits in the office, ready when needed, and with an appointment on the books, I feel some relief. I am looking forward to hearing what Dr. Manco-Johnson will have to say. Will we do another round of Rituxin? Start the Cellcept again? Or simply wait and treat with Novo daily until the inhibitor comes down?

I am starting to make my list of questions for the appointment. I want to be as prepared as I possibly can. Is that really possible? So many things to think about ahead of time….

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Tuesday, November 15, 2011

A Huge Realization

It was great to be back at the NHF Annual Meeting this year. We were not able to attend last year, so we have really been looking forward to Chicago. We had a great time, did lots of walking and enjoyed catching up with old friends and making new ones.

My husband and I had a huge realization. We were knocked out of complacency with our little "Christian." His target ankle is just in bad shape. He struggled with endurance and getting through the airports on the way home was really difficult for him.

When you are in your familiar surroundings, home, school, church, etc. things look a certain way. Then when you get out into the great, big world, sometimes things are more apparent. It is critical that we get "Christian" to the Denver HTC for an appointment. We were hoping to wait until January, but it is just not in the best interest of our son. I am waiting on a call this afternoon to confirm our appointment for December 14th.

I feel so alone with our HTC in Albuquerque being in such a big mess. Lack of staff and passion for the program is affecting our state in a huge way. Thankfully we have a nurse with tons of passion holding down the fort, but you never know what you are going to get in the way of physicians and it is scary.

I am writing my questions down and preparing for our visit in Denver.

In one of the sessions this past weekend, a mom who has a son with an inhibitor said, "Having an inhibitor is like hemophilia on steroids." That made a lot of sense to me. I just realized how specialized our situation with inhibitors truly is.

All I can do is keep in mind that my little guy struggles more than most. I need to not get frustrated and at the same time not coddle him.

That is what is truly difficult.

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Wednesday, November 9, 2011

It Never Fails

Our family is preparing to travel to Chicago for the National Hemophilia Foundation's Annual Meeting. And what happens? "Christian" is having a bleed in his left foot and is starting a nasty cough. It never fails that something happens as we are about to leave town.

But we do the best we can and move through it. It may take some extra infusing and cough medicines, but we forge ahead.

This is a huge opportunity for my children to be involved with others who have the same struggles and make friends in the community.

If you ever have the opportunity to attend the NHF Conference, go! It is a wonderful experience for the entre family.

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