February 15-16, 2021 "We are NOT going home!"

February 15, 2021 (Day 32 in the hospital) 

WE ARE NOT GOING HOME!!!!!!!!!! I couldn't be more upset. This morning the plastic surgeon interns came to change the dressing only to find that there was a linear separation (hole) in the incision. They said after Dr. Damitz did her first surgery today she would come up to see us. When she came, around 10:30am, she had the floor doctors with her. They all looked at it and agreed that he needs to stay longer. She wanted to call Dr. Elton and see if he had any suggestions. Dr. Damitz is not confident that they have cleared the underlying root of the problem, whether it was a CSF leak or the fungus. She's debating if they just need to let it do what it's going to do while they finish the full course of antibiotics so they know that the fungus is taken care of and THEN fix the left over problem. She thinks that if she does something operative then it may end up the same way again. She said even though the drain isn't producing but 8cc a day, after a week that is 50cc pooling under the skin to push it back open. So we are glad she left the drain in place. She's going to talk to infectious disease about how long they need to wait or if they need to do more cultures. 

Around 4pm we changed Rayden and found that that linear separation had indeed turned into a large hole!

Between the two yellow sections, underneath the scab is a large tunnel (you may have to zoom in). I called the nurse who in turn paged Dr. Damitz. She was in the OR again, but sent word that she would come as soon as she got out. When she arrived, only two hours later, the entire yellow section at the top was gone! She was glad we called her. She cleaned it with a qtip and I could see that it was deep but NOT so deep that I could see his insides like last time. It actually had a layer of skin in the bottom of the hole so that's a good thing. She hollowed it out underneath the scab and placed a wet packing strip inside. Again, she stated she was waiting to hear from Dr. Elton. She mentioned using a wound vac this time and how that meant going back into the procedure room and changing the dressing three times a week. 

What a roller coaster! We are at a loss and feel like we are back at the beginning again with packing the wound! 

February 16, 2021 (Day 33 in the hospital) 

This morning his incision was WORSE!!!!! The hole is getting bigger by the minute. The plastic surgeon intern was shocked when she took down the bandage. She even said a choice word! The hole was more hollowed out and looked even wider and deeper. The JP drain bulb will not even stay compressed because the hole is so large that it is sucking air instead of fluid. Dr. Elton and Dr. Damitz had a meeting to devise a game plan. They decided to do surgery tomorrow! This just can't wait anymore. 

1-Dr. Elton will do his part first. He is going to open up the bottom part of the incision and place a layer of AlloDerm over the spinal canal where the CSF is leaking, even though he said AGAIN that he isn't confined it is leaking. He said if it is a leak, it is awfully small so this is one last attempt to fix things. AlloDerm is a mesh-like, freeze-dried sheet/patch of donated cadaver human skin. They have removed all the cells from the donated skin, while retaining all of the important biochemical and structural components. As the body's natural processes take over, your own cells move into the AlloDerm. Over time, your cells transform the AlloDerm into your own healthy tissue. Dr. Elton will use a continuous permanent stitch (not dissolvable) all the way around the patch and then tissue glue to really seal everything up. His worry is that the patch does not have blood supply and it will take a while for Rayden's body to replace it with his own scar tissue. His worry is that we have this patch and then we have skin over top of that. The skin has blood supply and should grow blood vessels into that patch but it takes some time for that to happen. So it's a race between his body dissolving it or his blood accepting it. 

The only other thing he thought he would do if this doesn't work is go higher up the spine and put in a fluid drain to divert CSF away from that area. But that is extremely dangerous going into the spinal cord and he doesn't want to put him at risk. He honestly thinks its a blood supply problem not CSF leak. He stated again that most people with Spina Bifida just don't have good blood supply in several areas of the body and the skin will break down. Rayden's feet have this issue all the time. 

2-Dr. Damitz will do the second part of the surgery. She is going to wash it all out and do another culture. She didn't want to use a wound vac before because Rayden will have to be put to sleep three times a week to change the dressing! That's a lot on a little kid. Unfortunately, she thinks this is the best option at this time. A wound vac is a foam sponge that goes under the skin and over the OPEN wound. The vacuum pump creates negative pressure around the wound. This means the pressure over the wound is lower than the pressure in the atmosphere. The pressure pulls the edges of the wound together. She said the negative pressure of the suction will help produce collagen to allow the wound to heal faster. It should cut the healing time in half. She will decide later in the week how long the vac needs to stay in place. If she starts seeing red tissue growing in then she will take out the vac and close the wound. She may just do a smaller and smaller sponge until it eventually closes on its own. 

Rayden was voted Employee of the Month by the staff of 7th floor. They all signed the back of his certificate and even gave him a lunch box so he could bring his own snacks to work. The boss gave him a chapstick holder and a little flashlight that goes on his badge just like all the nurses wear. He's really official. He loves to do his job as door man but mostly enjoys talking to everybody at the front desk. 

 

Special shout out to Uncle Don & Aunt Kathy, Bethal Hall, Michele Mitchell, and Kallie Goudey for the monetary gifts of love. We want to say Thank You to so many people that are praying for us daily. We have received so many well wishes that it is impossible to mention everyone. Please know that we appreciate every one of you.