Sunday, August 10, 2014

New Horizon for the Sickle Cell Warrior

If you want to know more about sickle cell disease you can read this fact sheet...
And also a really simple explanation for kids

This time last year Asher had a very serious sickle cell crisis called acute chest syndrome (ACS) . During that time in ICU his blood pressure spiked extremely high, due to pain, that he also had 2 seizures. He was there for 2 1/2 weeks. 

We decided after that event to start him on a medication called Hydroxyurea - a medication that boosts the production of fetal hemoglobin that does not sickle. This medicine has proved to help many who suffer excruciating painful crises like acute chest syndrome. But it also can come with side effects. But, due to the severity of Asher's ACS, and the frequency, we decided to give it a try. 

Transfusion has always been challenging for him due to small veins and difficult access to them. We discussed a port (a device implanted under the skin that gives direct access to a larger vein), but the doc was concerned about infection. So we were willing to try hydroxyurea.

He started in October and all was well until January. As soon as his low dose was increased I began to see changes. 

In February he developed strep... was hospitalized in March due to it... then came tonsillitis... then mononucleosis. Both with additional hospital stays in April and the end of May.

There were also changes in his temperament and mental/cognitive changes. He became tired, angry, depressed, and confused at times... he walked around in a fog. I feel like we lost an entire school year. And by May I often felt I was losing my little boy's loving carefree personality.

So after careful research, much prayer, and seeking advice from those who have lived with sickle cell first hand, I approached Asher's hematologist to have him taken off hydroxyurea and to begin to have him chronically transfused.

I talked to older sicklers who have had ports for years with no infections. So the doctor is on board and we are going to give transfusion a try. He will need to go to the transfusion room at duPont/Nemours at least once a month but I think in the long run it will keep him out of the hospital with an emergency such as ACS.

So in about a week, Asher will have the procedure done to insert a port under his skin so he can be chronically transfused. He'll be there for about 3 days... the insertion is a pretty quick procedure but they need to transfuse him before he gets it done due to the "surgery" part. They watch for infection after. Everything is just a bit more complicated. 

I'm feeling really good about this decision and I'm excited about our new school year :) Praying!


dhm78 said...

I'll be praying for your Bubby, Terry. I always feel so concerned when he is under a sickle cell flair up. I just feel sick for you all as the Drs. Work to heal him. Thankful that Jesus is watching over these Treasures. Your boys and Grands are so precious and I just love watching your homeschool journey. We homeschooled both of our grown sons and now Anna. We love it!
Please keep us updated on the process of Asher's port and his transfusions.

God Bless you all,

Terry said...

Holly you are so sweet and thank you! He is much better today. Goes for some bloodwork tomorrow to prepare for the port placement the following week. Thank you for praying! I hoping this year homeschool will be a better experience for him. He is still really struggling to read and I know that his illnesses had everything to do with it. Onward to a new horizon :)

Kathy C. said...

I'm sorry he has to go through this.

Rose Anne said...

Praying that this will be the answer for Asher to be Healthy more than not!