Thursday, May 9, 2013

The Ups and the Downs

This past week and a half have been crazy with a lot of highs and lows.  The benefit race for Matt last Saturday was on of the highs!  It was so wonderful with so many friends and family there to support us.  Matt was able to attend and watch from the sidelines with his mom sitting next to him.  This was so nice as many of his friends were able to visit with him.  There were well over 120 friends there!  :)
I will post pictures when I am at home on my computer.

Some of the lows have been getting Matt's pain managed and trying to deal with the side effects of the pain drugs.  Matt seems to have a low tolerance to pain meds and they really affect his mood and reasoning.  As the pain meds have increased he has become more mentally foggy with trouble remembering things.  His mood can change very quickly and it has been hard for the children and I.

I have had to take charge of dispensing his pain meds and this has been a little daunting when in the night he is pain asking for more when the doctor told me I couldn't give him more.  He has had some pretty crazy hallucinations that have made us laugh but really have just made me sad and scared.

Last Friday we got the paper work done to bring in hospice and I couldn't believe how quickly they came once they had the green light.  We love the nurse and a hospital bed was brought in that day.  The bed has been very helpful for Matt as lying flat in bed causes him pain.

Monday I brought Matt back over to Phoenix to meet with the pain doctor who will work with hospice at home to keep him comfortable.  We really like her a lot and when she met with us she could easily see the change in Matt's mental status.  She recommended placing an intrathecal pain pump into his spine to help manage his pain.  This pump is able to provide pain relief with less medication and a lot less side effects, especially the mental side effects.  The only down side is that no one in Thatcher is able to take care of it.  It needs to be filled every few months and if the pain gets worse the doctor has to increase the dosage in her office.  This was a concern to hospice as well as to me but after reassurances that the doc will travel to us or will send a service if Matt cannot travel, I decided to move forward with it.

Yesterday Matt had the pump placed and he had to spend the night (as well as me) in the hospital for observation.  We are hoping he will be released in the next little while.  So far so good as last night he ate more than he has eaten in two months.  This morning he seems to be back to his normal self again and we took a walk around the halls of the hospital.  I am praying that this will be the right answer for him.

Matt had an MRI done of his spine which showed a new tumor in his lower spine, but neither spine tumor showed signs of causing fractures which could be worrisome.  So on the advice of the pain doctor as well as the oncologist we have decided to hold off on radiation or RFA to his spine tumors for now and see how well the pain pump works for him.  The radiation will only help with a portion of his pain and as time moves forward more pain will arise.

I get scared a lot that I will not be up to the final part of this journey, but I gain comfort from knowing that my family and Matt's family will be there with me every step of the way.  God is there right next to me as well and I can see his hand in my life at every turn.  There are so many people that he has put on my path that I am so amazed at his great love for me.  Your prayers in our behalf are being answered!  Thank you all so much!  We love you!

2 comments:

  1. Put your family's name on the temple prayer rolls here in Dallas today Niki. Hang in there and know that so many of us are continuing to pray for all of you.

    ReplyDelete
  2. Where can I see him?
    We live in Mesa...happy mothers day Niki?

    ReplyDelete