Saturday, June 26, 2010

picu

Matthew was moved to the PICU last night for observation as his blood pressure had dropped and his fever remained fairly constant.  Since then, his blood pressure has returned to normal and he has been fever free since this morning.  He is still battling a very nasty blood infection and has been for the past several days.  The nights are sleepless.  He is in considerable pain and we are giving every pain medication we can as often as we can to try to make him comfortable.  This afternoon, he did start to calm down and he has also napped for a couple of hours straight which is a huge improvement.  He had a tube put into his nose and down to his stomach for suction.  There was indication of a blockage of some sort that the suction was going to help alleviate.  As his vocabulary is limited, it is difficult for him to tell you what hurts.  He cannot eat or drink anything and is all he says is 'tummy hurts', 'water', and 'chocolate milk' (pronounced 'chalk-it milk').  I tend to joke around but it is the most hellish and unbearable experience imaginable.  The exhaustion, anger, frustration, confusion will (not can...will) wear you down.   The support from everyone has been awesome and we need it now more than ever. 

Just learned that a friend of ours is running the chicago marathon for the leukemia society.  Other friends of ours also have been involved in activites for leukemia awareness.  I know with a great deal of certainty that matthew would not be alive without this research.  I do not think I mentioned this before but the reason that there is little data regarding matthew's current relapse is that until recent advancements, kids simply did not live this long.  They are seeing more cases like matthew's because more and more kids are living longer and longer as the treatements for leukemia improve.  I am sure there is a fundraising component for her marathon training and will post that info when I get it. 

Matthew and Claire's new ipad arrived with little fanfare.  I am surprised at the amount of time I have had to devote to playing with configuring it to maximize their educational experience. 

6 comments:

littlebug-peg said...

Dear Gene and Nicole,

We want to hug you all so badly! Soon, at least Michael will be there to do so; he's planning a trip on July 12. You all continue to be in our prayers.

We miss and love you,

Peg and Michael

Carrie said...

Praying for all of you. I simply cannot fathom the pain of watching your innocent child in so much pain. It makes my heart hurt to think of Matthew suffering at all. Thinkingand praying for Matthew and your entire family every day.

Carrie Katai

Ellen said...

I cannot even imagine the pain Matthew,you,Nicole, Claire, and the rest of your family are going through. You guys are in my prayers. I pray that God helps Matthew and you all with your pain. If you guys need me for anything you have my number. If Nicole wants someone to sit with her during the day, just say the word. I'm here for you both no matter what you need.

Anonymous said...

Just want to let you know that you are continually in our prayers. God bless you all and keep staying strong.

The Roberts

Jean said...

Dear Matthew and Family,
My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
Please know that others are thinking of you and pulling for you! To learn more about our programs and services, you may visit www.nbmtlink.org or call 800-546-5268.
P.S. I’d like to offer you a copy of our award-winning "Caregivers’ Guide for BMT: Practical Perspectives" if you send your mailing address to me at jeansjones@gmail.com

Garbis Grapevine said...

Thinking and praying for you all during this horrible time. I wish someone could make all things better.

Love, hugs, prayers, and positive energy

Lisa