February 12-13, 2021 "Getting better-then worse!"

February 12, 2021 (Day 29 in the hospital) 

It has been a pretty uneventful day. We were able to make it the playroom and complete a snowman craft together. The plastic surgery team still wants to observe him for a couple more days before they agree to discharge. They still have to remove the JP drain. I dread that! The infectious disease team switched two out of three IV meds to oral but he just can't take the Flagyl. We've tried it with all kinds of things. It just gags him so bad that he throws it up every time. I even tried it in the ice cream and almost threw up myself!! They only wanted to send him home with one IV med to be given through the PICC line but they just had to switch the Flagyl back. I hated to do it, but it's just not worth it. That means he will be getting the Flagyl 3X a day and the Ceftriaxone 2X a day through his PICC at home. They are contacting our insurance company to get supplies, medication and a home health nurse to begin Monday. So our goal is...GO HOME MONDAY!!!! 

February 13, 2021 (Day 30 in the hospital) 

Rayden is feeling fine, just a little tired. He isn't complaining about leg cramps anymore and his back only hurts when we change the bandage. There are a few small areas of concern that the plastic surgeons are still concerned about. They just don't want to send us home until they are 100% sure it will not break down and come back open. They also haven't taken the drain out yet. The nurses are teaching me how to administer his medication and heparin in his PICC line in hopes that we can go home Monday. The infectious disease team still believes he will need to continue these antibiotics for more than a week at home. 

We spent the day just trying to find things to keep Rayden entertained while stuck in a hospital on IV meds. He went to the playroom, built with Lincoln Logs, walked a lot, built a bird out of modeling clay, and played video games in the room. All the nurses on this floor know him very well by now. They all stop him in the hall and talk to him (which he loves). They even allow him to push the button on the medicine shoot. 

Rayden loves to walk around checking on all the babies on this floor. The nurses know by now that if they are feeding one of them or if the baby is crying that Rayden is coming. They will hold the baby up so he can see them. So precious. He has become attached to one of the babies here because the mom and dad talk to Rayden as he walks by. They have held Tucker up several times for Rayden to see him and he even pretends to call him on the phone. 

When I think about the roller coaster we have been on these past 30 days it really pulls on my heart strings. Rayden has been through so much pain and agony. 

I am so thankful he feels good enough to play now and isn't moaning in pain anymore. I am so thankful he can sit up without getting dizzy and screaming. I am so thankful he can get up and walk on his own and isn't slapping his feet together and needing us to hold his body weight up anymore. I am so thankful he can smile instead of cry. I am so thankful he is eating and not throwing up. I am so so so thankful his back is drying up and isn't pouring blood and fluid anymore. There are so many things to be thankful for. I praise God for bringing him through all of this. No, we are not on the other side yet, but I do see the twinkling of a light at the end of the tunnel.