Rayden and I went outside today for a picnic in the courtyard. It is suppose to be beautiful all week so I guess we will add this to our daily routine.
The floor doctors are still trying to get Dr. Damitz, plastic surgeon, to release us somehow. The rented wound vac and box of supplies arrived to our room today. They asked how I felt about going home and driving back 3 times a week or at least going to stay at the Ronald McDonald House. I honestly don't care if I stay here an entire year, as long as it's the best thing for Rayden!! I trust Dr. Damitz, and will do whatever she recommends whether the floor doctors like it or not! If I go home and this thing opens back up, I will absolutely lose my mind!
It's amazing how God works through people to remind me that He is still here walking through this fire with us. We feel so many praying for us daily and we are constantly receiving text messages of inspiration but God knows how anxious I felt when Michael had to go back to work. He worked through Carol Raines to send me a daily devotional and a book entitled "Worry less, Pray more" yesterday. He also worked through Deneice Elmore today when she sent me a song entitled "Fires" by Jordan St. Cyr. It's the little things that speak so loudly if you just allow yourself to listen.
10th wound vac change
Rayden's wound vac change went very well this morning. He has now mastered the steps to changing the vac just like he did the PICC line. He was actually telling the surgeon what steps to take and what to do next! Of course, she loved it because that just proved that he was comfortable and unafraid. The wound's progress is so slow and minimal that it is almost not even noticeable. I just have to keep reminding myself that it is getting better each time. Dr. Damitz said she was getting push back from the floor doctors that she needed to find a solution for us to leave the hospital. She reminded them of his complex history and the many obstacles he had to overcome just to get to this point. She said she refuses to allow him to regress. He can't go home because there isn't a home health agency that will come to our house for wound vac changes or complications that may arise. He can't go to the RMH or home to come back and forth because she doesn't do clinic appointments but once a week and he needs his change three times a week. It's best for him to stay inpatient because the surgeons are here every single day. She predicted it taking another week or two to completely cover the AlloDerm so we can transition to wet-to-dry dressing changes.
Rayden and I have had a very busy day. After his sponge bath and wound vac change we washed clothes. Now that may not seem like anything worth talking about, but it's actually a huge event. We have to take a trip down to the 2nd floor and down a very, very long hallway three different times just to get them completed.
He also met with his hospital teacher and physical therapist. During PT he had to sit and balance himself on a bouncy ball while building a marble rollercoaster. He had to stand up from the bouncy ball using his core muscles, without pulling on the table. That was tough. While standing, he wasn't able to lean on the table with his belly which is what he normally does to balance himself. He had to bend down to the floor to pick up pieces and stand back up without pulling on things. These little things we take for granted and may not seem like much, but they are rather challenging for Rayden.
We had a scheduled appointment in the play room and enjoyed lunch out on the butterfly terrace, which is on the rooftop. What a magnificent view! We had the entire place to ourselves. It was so good to see Rayden play on the pirate ship and use his imagination as he pretended to be a pirate, a captain, and a fisherman. We actually saw the helicopter take off while we were eating our lunch and land while we were playing. That just made Rayden's day!
We haven't made a Rayden fundraiser shirt in 6 years. Here's your chance to get a new one and help us out at the same time. Please order yours today because the campaign will close in 2 weeks. Thank you all for your continued support. I can't wait to see pictures of you in the shirt.
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