March 29, 2011

So much to update you on and so little time. First I just want to give glory to God for allowing Tom and I to bring our baby home last Friday the 25th! When we were initially diagnosed and signing the consent forms for treatment, my worst fear was that once we left home I might not ever bring my baby back home. Praise God for his healing hands that were resting on my child, His child, through the pain and suffering. Tom and I and all three boys are overjoyed to be home as a family once again.

I will back up and give you a brief update from last week. Grayson had surgery on the 22nd which was planned to take out his Hickman and place a port in his chest. Tom and I did a lot of research and praying about this because it meant additional cuts on his chest and neck and we weren't sure it was necessary. We were told by everyone that the port was the way to go and since it is under the skin he can bath normally, go swimming, etc. Anyway, the morning of the surgery I just didn't feel right about it. I was having major anxiety and no matter how much I prayed I did not feel peace about it. It wasn't that I felt the port was a bad choice but I felt that we should wait just a little longer to put him through another surgery. We were in the Pre-Op area at 5:30am and I was pacing and praying and just felt like something was off. Not a good feeling when baby is about to go into surgery. Tom said he had peace knowing it was going to be better for Grayson and that God was in control. I did not however, communicate everything I was feeling because I thought that maybe I as just overreacting and so I didn't tell my husband that I thought we weren't supposed to be doing this. Anyway, we went ahead with the surgery. I was praying like crazy and felt sick the whole 2 hours he was back there and I was in tears when they told me they were all done and he was okay. We went back to the PACU and he was a mess. He wasn't awake but wasn't asleep and we were told he did not wake up well from anesthesia. It was like he couldn't wake himself up and he was disoriented and even nursing couldn't comfort him. Anyway we wound up staying some extra time in the PACU and gave him some pain meds to help him fall back to sleep. The second time he woke up he was better and I felt much better when we signed the discharge papers. We went back to the apartment and took a nap and when Grayson woke up he was hot and his face was flushed. I took his temp and it was 101.7! This child has not had a fever in the entire time we had been out of the hospital even after the first two bone marrow procedures. Of course he would spike a fever after the port placement that I didn't feel right about. Whenever a post BMT patient spikes a fever it means an automatic 48 stay in the hospital and antibiotics. So we took him back to the ER on the 22nd and were admitted to the 8th floor. It was bitter sweet to be back there. I was hoping to only go back for visits to see our nurses, not because we had to be admitted. The good news was that the doctors think it was just a post-op fever and it went away and didn't come back. All his viral and bacterial testing came back negative so we got to leave Thursday. My nice plan to pack up the apartment never happened because we weren't discharged until Thursday evening. Tom and I were able to get most of the apartment packed up late Thursday night.

Friday morning we went to clinic hoping to hear good news. Our attending told us: 100% donor marrow so you can go home! We were jumping up and down. I was crying and Grayson was like "what the heck is going on?" It was a short visit because we couldn't wait to get out of there. My mom came down and helped pack up the last bit of stuff and Tom loaded all three of our vehicles with the massive amount of "stuff" we had accumulated during our hospital and apartment stay. I couldn't believe how much we had to pack and load. My super strong husband carried three large bins at a time down three flights pf stairs and out to the cars. He loaded the majority of our belongings by himself. (Big mistake!)

We got home Friday afternoon and my mother-in-law had decorated the house with balloons and banners. I was so excited to be home I of course assumed the baby would light up with excitement too. I was wrong. He was overwhelmed and he did not remember our home. He was barely 10 months when we left. He had to adjust to living in the hospital and then living in the apartment so I think to him it was just one more new place. To me it was shear joy to bring home back through our front door.

Gavin and Grandmom decorated the door!

Our family back together. The kids were all clapping!

Our rowdy boys!

The first weekend home Tom and I planned not to have any company and that we would just unplug from the world and focus on our family and reconnect. Hmmm, when will I learn to stop planning. Friday night was hard for the baby because I couldn't leave his sight without him sobbing. We have been so close these last few months and being in a new place made him extra clingy. I didn't get to relax with my boys that night and Grayson didn't want to sleep in his crib. He wanted to sleep on top of me and Gavin had gotten used to sleeping with Tom in our bed while I was gone, so all four of us were crammed in our Queen sized bed and it was not a restful night sleep at all. Saturday morning we woke up and Tom couldn't turn his head left or right and was sore in his upper back (see above for reason why). All day Saturday he was on the couch. Couldn't lift anything, including our kids or really move without pain. We weren't able to unload our cars or start putting things away Friday night so I brought a few things in as I could with a clingy baby and a 3 year old climbing on me. I LOVED EVERY MINUTE OF BEING WITH THE KIDS AND MY HUSBAND! I did not love the chaos of bins and boxes and no partner to help put it all away. Saturday night was even more restless with all 4 of us again in our bed and Sunday Tom woke up and he couldn't move his neck or torso. I had set my alarm to go to the early service at our church and when I got up he couldn't even get out of bed let alone watch two kids while I went to church. My in-laws came to our rescue again and my mom-in-law took Tom to the ER so I could stay with the baby. He couldn't move without pain and they wound up prescribing Valium, Vicodyn, 800mg Ibprofen, and steroids! He came home in a neck brace and was dazed and confused for the rest of the day. So much for a nice relaxing weekend (Tom was relaxed at least after those drugs). I told him I might as well get a job at a hospital because I can't seem to keep my family out of them. He is still not better and needs to see a specialist but he is at least moving around again.

The rest of this week has been a lot of adjusting for all members of our family. I got up yesterday and fixed myself and the baby breakfast and sat down to start eating and realized I had fixed nothing for Tom or Gavin. It was like I was on auto pilot or something. Very strange but I have enjoyed starting some new routines with the kids and I'm really enjoying just the everyday tasks that I missed out on like bathing, brushing teeth, getting dressed, etc. (I am talking about the kids here. I actually did all those things myself while I was gone ;)

Grayson and Gavin a few days after he had come home. He loves his brothers so much.

It is truly a blessing to be home and while I am sure it is going to take us a while to get back into the swing of family life, I am looking forward to every minute of it. I cannot tell you how much more appreciative I am of the time I have with my family. Nothing else matter right now. Thank you all so much for your steadfast support. We are celebrating our son's return with all of you!

Here are some videos you might enjoy (not all of the video links are posted but should be by tomorrow):

Grayson at the apartment a few weekends ago playing with his toy ambulance. He is making crashing noises because that is what his older brothers were doing. Gavin is showing how much he misses mommy's attention. After I watched this back I made sure to give him some extra one-on-one time.

http://www.youtube.com/watch?v=C61BmOxU3OM

Grayson in the apartment eating his favorite food, broccoli.

http://www.youtube.com/watch?v=t-7iWsLqiNQ

Grayson's homecoming which was filmed by our 10 year old Mason (take some Dramamine before viewing)! *I decided not to post this because it was really hard to see what was going on.

Yesterday Gavin was reading Grayson a story.

http://www.youtube.com/watch?v=s-TkXlUnNa8

Tonight Gavin and Grayson playing in Grayson's crib. Grayson is getting much more comfortable with his surroundings.

http://www.youtube.com/watch?v=Iej0y4u-m4A