Angel yelling "Look out woooooooorld!!!"
At the point of the last post Angel had started the week off a little rocky but by mid-week it looked as though home was near again. But on Wednesday it was clear that going home was postponed after some bleeding from his ostomy. After further review and 24hrs of monitoring going home looked like a possibility again, as the bleeding was only a one time thing. So another plan was made late Thursday that if another 24hrs went by without problem we would leave on Friday.
Friday morning came and everything looked great. But first thing in the morning Angel wanted to go "poop", which was very unusual. Turned out that he had more dark blood.... now from below. So at this point all bets were off and it appeared that the GI team would have to reevaluate and keep us in the hospital for observation a few more days.
But as the transplant rollercoaster goes the GI head doctor felt that it was to be expected with the issues we had earlier in the week and discharge on Friday would be fine. This news came at about 1230 as we sat back all relaxed figuring on being in the hospital over the weekend. But to our surprise we were being discharged and allowed to leave after one last infusion...Discharge was planned for 5pm.
After collecting all of Angel's things that accumulated over 66 days and getting Angel ready we packed up and actually left... Walking out the doors of the unit was very surreal. The head transplant surgeon that did Angel's surgery was coming out of the ICU and happened to meet up with us at the elevator. We shook hands, said a big THANK YOU and continued on our way. Angel came into the hospital with this great man welcoming us in and he was there on our way out...it was soo cool.
Angel also wanted to wear his super hero costume and was very into character as we left. When Angel walked out of the doors of the hospital, he stood at the exit looking outside and said with a loud voice "Look out Wooorld!" it was great...
Getting into the car Angel marveled at his car seat and even said woohoo when we pulled away, as if he was on a ride. But as Daddy picked up the speed to a raging 35-40mph =) Angel was nervous and asked to slow down...it had been awhile and being in the car was needing a little getting use to.
Once we got home it was pretty crazy unloading, showing Angel around, Hudson and Angel establishing their new territory, TPN, IV meds, JT meds, ostomy outputs...dinner & then bedtime. As we were getting ready for bed we noticed that Angel's stoma was discolored, as if the skin in a small section was not getting good blood supply....
So here we are less than 6 hrs at home calling back to the hospital to report a problem. I took a picture of the stoma with my phone and emailed the doctor on call. After talking to her at about 11pm we decided to observe it overnight & if it got worse to come into the hospital and be examined...
So though we were home we were on an extremely short leash...I stayed up after midnight watching for any changes. But it appeared to be the same and I went off to bed. In the morning the abnormal area appeared to be getting better overall but a small thin line was darker... After emailing with the doctor we are still home keeping a close eye on it.
What an emotion roller coaster. Excited to be home but very guarded. Angel and Hudson played really well today. Video games, action figures, house, outside play, etc... It was sweet. They are now both down for a nap and Sarah and I are resting. It is wonderful to be under the same roof and working together as a team. Sarah is an amazing partner she is very structured and organized and yet flexible and willing to jump in and help me with Angel's new cares. Little Haven is a bit more content these days and that helps with the routine as well as Sarah getting enough sleep.
Well our family is together and for a moment it is peaceful and very normal...we will enjoy it and savor it as long as it is granted to us.
Till the next time... Thank you all again for you love, prayers and support!!!
Friday morning came and everything looked great. But first thing in the morning Angel wanted to go "poop", which was very unusual. Turned out that he had more dark blood.... now from below. So at this point all bets were off and it appeared that the GI team would have to reevaluate and keep us in the hospital for observation a few more days.
But as the transplant rollercoaster goes the GI head doctor felt that it was to be expected with the issues we had earlier in the week and discharge on Friday would be fine. This news came at about 1230 as we sat back all relaxed figuring on being in the hospital over the weekend. But to our surprise we were being discharged and allowed to leave after one last infusion...Discharge was planned for 5pm.
After collecting all of Angel's things that accumulated over 66 days and getting Angel ready we packed up and actually left... Walking out the doors of the unit was very surreal. The head transplant surgeon that did Angel's surgery was coming out of the ICU and happened to meet up with us at the elevator. We shook hands, said a big THANK YOU and continued on our way. Angel came into the hospital with this great man welcoming us in and he was there on our way out...it was soo cool.
Angel also wanted to wear his super hero costume and was very into character as we left. When Angel walked out of the doors of the hospital, he stood at the exit looking outside and said with a loud voice "Look out Wooorld!" it was great...
Getting into the car Angel marveled at his car seat and even said woohoo when we pulled away, as if he was on a ride. But as Daddy picked up the speed to a raging 35-40mph =) Angel was nervous and asked to slow down...it had been awhile and being in the car was needing a little getting use to.
Once we got home it was pretty crazy unloading, showing Angel around, Hudson and Angel establishing their new territory, TPN, IV meds, JT meds, ostomy outputs...dinner & then bedtime. As we were getting ready for bed we noticed that Angel's stoma was discolored, as if the skin in a small section was not getting good blood supply....
So here we are less than 6 hrs at home calling back to the hospital to report a problem. I took a picture of the stoma with my phone and emailed the doctor on call. After talking to her at about 11pm we decided to observe it overnight & if it got worse to come into the hospital and be examined...
So though we were home we were on an extremely short leash...I stayed up after midnight watching for any changes. But it appeared to be the same and I went off to bed. In the morning the abnormal area appeared to be getting better overall but a small thin line was darker... After emailing with the doctor we are still home keeping a close eye on it.
What an emotion roller coaster. Excited to be home but very guarded. Angel and Hudson played really well today. Video games, action figures, house, outside play, etc... It was sweet. They are now both down for a nap and Sarah and I are resting. It is wonderful to be under the same roof and working together as a team. Sarah is an amazing partner she is very structured and organized and yet flexible and willing to jump in and help me with Angel's new cares. Little Haven is a bit more content these days and that helps with the routine as well as Sarah getting enough sleep.
Well our family is together and for a moment it is peaceful and very normal...we will enjoy it and savor it as long as it is granted to us.
Till the next time... Thank you all again for you love, prayers and support!!!
6 comments:
What a wonderful update.
Praying so much that things continue to just get better and better.
well, after the tears in my eyes cleared, i advised my family and they were so happy. here everything is a family affair. even my internet usage. we will continue to pray for you and sending happy thoughts your way.
Oh that made me cry tears of joy for you all!!! Welcome home Angel!
Oh this is wonderful news. So happy to hear you are all under one roof again. Praying for Angel's continued recovery.
Theresa
it's amzing to see God's work unfold. You two had to be the only ones on the planet made to be his parents. I hope he is still doing well :)
What a wonderful suprise to get onto to your blog and read that Angel is home and doing well. We continue to keep your family in our thoughts and prayers. XO Rich and Jenny from SLT
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