Day +28.........out of hospital!!

Hello Everyone!! Well, we are out!! YAY!! Yesterday was one of the LONGEST days of my life.....but we made it!! I think Karyna and I finally made it to bed at 2am!! To say last night was overwhelming would be a HUGE understatement!! After moving things from the hospital and all of the paperwork, I was exhausted. Then we had to still have the home health nurse come over to show me how to give him his 7 meds!! Not only do I have to just give them to him, I have to prepare them. Let's just say that I probably completed a whole nursing IV course in about 2 hours!! It was a terrible and exhausting night, but everyone lived and Dylan got the meds he needed. We got to the clinic this morning around 10 and at that time I had about 2 hours of sleep between Dylan not sleeping and all of the other medicine drama. When we got there, they were not surprised at my lack of sleep. They said that first night is always the worst. AND THEY WERE RIGHT! Tonight, there was about 10% of the stress and I was able to do everything that I was taught and did not freak out as much. It was almost fun.....ALMOST I SAID. :) Dylan has now 6 nightly meds, one of them is oral, and the others are all IV. He also has 3 other pain killer/nausea meds that I have to mix with saline in syringes if he happens to need them. It looks like a hospital in our living room and I think I have gone through 100 saline syringes already!! Good thing we have good insurance that pays for all of this fun stuff!!

Dylan is doing better with his ear infection. He is no longer crying incessantly, but only intermittently. He is still not feeling like himself. I have not seen a smile for days and we are lucky to see his eyes fully open....most of the time they are open just barely enough for him to see what is going on. The poor little man is just fighting so hard on the inside and outside!! The good news is that his white count continues to go up without the help of medicines, and he is holding onto his platelets and red blood cells longer. We will find out tomorrow if he is producing his own yet---it still may be too early, but with Dylan, and GOD, ANYTHING IS POSSIBLE!! He did well in clinic today. The pic of him in the chair is from today in clinic. He mainly slept (because he did not sleep at night!) and just relaxed while they gave him his medicines. We were there for 4 hours today and expect to be there about 6 tomorrow, if he needs any transfusions. The doctor is looking into dropping one of his meds that may be causing the grumpiness. It is a med that protects against Graft VS Host Disease, but the doc does not feel that D is going to get it. SOooooooo please pray that they can drop it. I would love that and it would make D feel so much better.

Karyna is going home for the weekend and Mellissa got here this afternoon! It is so great to have the help!! We are blessed beyond measure with amazing family!! I can always count on them and I love how all of our relationships have grown because of this tragedy. My other sister Mandy and her boyfriend Josh are coming tomorrow, so it will be great to have the company!! Everyone has been so supportive, both family and friends, and even strangers--I cannot say THANK YOU enough!!! Thank you for keeping us in your prayers!! Here are a few specifics:
--Pray for Erik, he is still really sick and may have to go back to urgent care.
--Pray for me as I am overwhelmed with a lot of responsibility and that I lean on others to help me. I have a problem--I don't like asking for help!! :)
--Pray for Erik and I as a couple that we can keep our marriage strong even with all of the stress
--Pray that Baby D starts to make his own blood products and that we can figure out a way to make him feel like himself again!!


Those are just a few for now!! We love you all!!

"My body and my mind may become weak, BUT God is my strength. He is mine forever."
--Psalm 73:26


Love, Michelle