So Much to Be Thankful For
Joey had a pretty good day yesterday too. He stayed on vapotherm for 24 hours without any episodes and they reduced his LPM from 8 to 6. He was on 40 percent oxygen all day yesterday and through the night, but this morning when I walked in he was at 30 %. The nurse last night said his oxygen sats were at 100 last night, and at the 30-he's about 97-98 still pretty high. An X ray was performed and his colon is still dilated, which they think from one of his tubes not having the best placement and blowing air, so they are still holding off feeds. They still plan on following it very closely. The line that was attached to his heart was removed, so they are going to do one more echo to make sure that there is no fluid surrounding his heart, and his heart pacer wires were also removed. So now, there are less lines and less meds being used. He is not currently on any blood pressure meds, just sildenefil for pulmonary hypertension management and lasix for fluid in his lungs. I think they are also going to wean his methidone completely today, so the last anti-anxiety drug he will have left is clonodine. Hopefully, that wean will go smoothly. His heart has been doing so well that they are moving us out of the Cardiology ICU and moving us back down to the NICU. I’m going to miss my own bathroom, my bed, window room, fridge, water filter, and eating in our room! The tenth floor PCICU is going to be hard to leave, but it means Joey is rocking it so we will take the downsizing-ha! Now that the medical updates are out of the way, let's move on to the fun stuff.
Last night they had this amazing event at the children's hospital that touched my heart. As parents of children at the NICU, we were able to pick out gifts for all of our kids under 18-for free. We checked in, a volunteer met us with a wagon, and we picked out some nice toys and stocking stuffers for Joey, Rowan, and Claire. We literally left with two trash bags full of fun items for our kids. It was so touching to us, because although we have volunteered at a few Santa's Workshops like this in our life time, we have never actually been recipients. It's always a blessing to give, but it's really cool to experience the goodness and relief of receiving. What the "receiving" of this means to us and some of the other families feels like-Daniel and I got to experience the actual excitement of Christmas. We have been extremely busy with Joey, so although we have bought some gifts for Christmas thanks to Amazon, we haven't actually gotten to shop together to actually feel and touch picking up items for our kids. I think there's always excitement in actually picking out things. We got to do this last night thanks to this amazing volunteer event. For a friend of mine who is here with her 2 year old, she hasn't had time at all to do any Christmas shopping, so thanks to this event, he's got some toys to open on Christmas with his baby sister who is here at the hospital. Did I mention they also wrapped the gifts for you?! I must also mention that at the stuffed animal table, I was overwhelmed and couldn't figure out what to pick out so this kind volunteer asked me how old Joey was and came back with the cutest stuffed elephant. This made me smile, because before Joey was born my friend Christy gave the volleyball moms elephant figurines to put up around their home so that every time they saw this figurine, they would pray for Joey. I thought it was a nice God wink that this volunteer just randomly selected an elephant without knowing the significance behind this elephant for Joey.
Another reason why these gifts were so special is we Joey won’t be at home for Christmas, and he will miss out on the tradition of waking up with us for Christmas. He won’t get to open up those gifts around our tree. However, what the volunteer event provided for us is the opportunity for Joey AND the kids to open up another set of gifts around Joey’s Christmas tree in his hospital room on Christmas. We will get to have Christmas at home and with Joey in his room. We are so blessed.
Last night they had this amazing event at the children's hospital that touched my heart. As parents of children at the NICU, we were able to pick out gifts for all of our kids under 18-for free. We checked in, a volunteer met us with a wagon, and we picked out some nice toys and stocking stuffers for Joey, Rowan, and Claire. We literally left with two trash bags full of fun items for our kids. It was so touching to us, because although we have volunteered at a few Santa's Workshops like this in our life time, we have never actually been recipients. It's always a blessing to give, but it's really cool to experience the goodness and relief of receiving. What the "receiving" of this means to us and some of the other families feels like-Daniel and I got to experience the actual excitement of Christmas. We have been extremely busy with Joey, so although we have bought some gifts for Christmas thanks to Amazon, we haven't actually gotten to shop together to actually feel and touch picking up items for our kids. I think there's always excitement in actually picking out things. We got to do this last night thanks to this amazing volunteer event. For a friend of mine who is here with her 2 year old, she hasn't had time at all to do any Christmas shopping, so thanks to this event, he's got some toys to open on Christmas with his baby sister who is here at the hospital. Did I mention they also wrapped the gifts for you?! I must also mention that at the stuffed animal table, I was overwhelmed and couldn't figure out what to pick out so this kind volunteer asked me how old Joey was and came back with the cutest stuffed elephant. This made me smile, because before Joey was born my friend Christy gave the volleyball moms elephant figurines to put up around their home so that every time they saw this figurine, they would pray for Joey. I thought it was a nice God wink that this volunteer just randomly selected an elephant without knowing the significance behind this elephant for Joey.
Another reason why these gifts were so special is we Joey won’t be at home for Christmas, and he will miss out on the tradition of waking up with us for Christmas. He won’t get to open up those gifts around our tree. However, what the volunteer event provided for us is the opportunity for Joey AND the kids to open up another set of gifts around Joey’s Christmas tree in his hospital room on Christmas. We will get to have Christmas at home and with Joey in his room. We are so blessed.
Prayer Request for Joey: Continued improvement for Joey’s lungs and breathing and that he will no longer have a dilated colon.
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