Post-Op Day 4
Yesterday was a really good day for Jack. We got him up and went to the play room for the first time. He played play-doh with some friends. He was in great spirits and walked a good bit. We came back to the room after that to rest for a while but he could NOT miss the Lego Movie playing in the room of Magic downstairs so at 3 we loaded him back up in his wagon and went to the movie. He loved the room and the big movie screen but about 3 minutes in he decided he was just too tired so we went back to our room to rest. He didn’t take a nap ALL DAY! He talked more like himself and played some in his bed. We did stickers and played with some of his toys. He drank all of his medicines good in his milk cup so we didn’t have to stress over getting him to take them anymore. His drainage was still about the same. Dr. Pearce came by and said that if the drainage doesn’t slow down they will have to look at some options to find out why it is flowing so heavily. One of those is another cath, which of course we want to avoid because it means anesthesia again and our boy taking steps backwards. So we’re continuing to pray that the drainage slows down soon.
Yesterday evening after the movie Jack was really tired and in a lot of pain and he started itching. They say that is a side effect of the morphine so they gave him some benadryl in his IV. After just a couple of minutes he started going crazy. He was screaming and kicking and thrashing. He was yelling out stuff that didn’t make sense. He thought he was falling and he was just lying on his back. He was scratching and pulling on every wire and cord. It was awful. BUT it was familiar. He did the same thing the night before. After they stopped the IgG infusion the night before they gave him a dose of steroids and benadryl at the same time to reverse the bad reaction he was having to the IgG infusion. He started having that same crazy reaction. We thought it was the steroids. They gave him morphine and he passed out. Well, after seeing that same response tonight we realized that he just can’t tolerate benadryl. So they had to give him morphine again to knock him out and let the benadryl have time to get out of his system. Needless to say benadryl is going on his drug allergies list! Other than that one episode it was a really good day. Its so amazing to have our sweet boy’s personality back, even if that includes him sassing and bossing us around! ;)
Post-Op Day 5
Today was another really great day! Jack slept good last night since he didn’t nap yesterday. He woke up a few times through the night when his nurse was in here. He still HATES the chest PT. But he’s back to talking non-stop. Every nurse, doctor, physical therapist, respiratory therapist, pretty much anyone who comes in our room has to play with him and hear his stories. He’s talking everyone’s ears off! Its just wonderful. He’s smiling and laughing and getting his energy back. We went to the play room again this morning and he played with the kitchen for a little while. Then we moved to the play area in front of the big window so he could sit and play and feel the sunshine. He played blocks with his daddy and had a good time. He laughed and giggled the whole time. When he got tired we made him walk about a fourth of the way back to the room before we let him get in his wagon. We went back to the room and rested until time for the build-a-bear workshop downstairs. He could NOT miss that workshop. We loaded him back up in his wagon and headed down stairs. He got a bear and named her Madison. He doctored her all up and had a great time. He didn’t want to leave when we were done! But bother was waiting on us in our room so we headed back up to see him. Jack and Harrison were both equally ecstatic to see each other! Jack’s Nonna, Mimi, Shay, and Aunt Jeanie all came and brought tons of prizes for him to open. He had a great time playing with all of his new toys.
Harrison got ready for a nap and Jack was feeling tired and needing to rest so everyone decided it was time to go. Daddy decided to go home with H for the night since he’s been away from us all for almost a week now. (Can I just take a moment here to say how amazing my mom and mother-in-law are for keeping H for us this entire time? They’re the best! They’ve even been bringing him over here to see us!) So now its just me and Jack for the night. We’re pretty much settled in for the evening. He’s watching Frozen and eating Doritos. Feeling pretty good at the moment, although he’s having some pain and doesn’t want to drink his milk because he knows his medicine is in there!
The nurse practitioner came in and talked to me about what is going on with the tubes (mostly because I made her.;) She said that right now we’re just in a waiting period. She said it doesn’t always happen but definitely happens often. The drainage is just another result of the new blood flow and Jack’s body trying to get used to the new pressures. It will stop when his body is finished adjusting. The GOOD news is that his fluid never turned that milky color that is associated with the chylothorax. She said that he’s been eating and drinking enough now that we should have seen a change by now if that was going to be the case. We’re not 100% out of the woods with that issue but she said that she would say that it probably isn’t going to change. So yay for that! No weird diet! She said that there is a possibility that we will have to have another cath if the drainage doesn’t stop but thats not in our immediate future. For now and the next several days we just wait and continue to get Jack moving and keep the fluid draining. The more he moves and walks the more it will drain out of his body. He’s also on a couple of medications that are meant to dry that fluid up more quickly. It’s likely that we will be here for another week or so just watching the tubes drain. Our prayer of course is that it will dry up on its own without further intervention. Then Jack can continue to get better day by day and go home when they stop draining. Please continue to pray for these things with us.
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