Summary (cont)

2/3/13 at 1430 hrs - Katelyn is getting some drugs to pull more of the remaining fluid back into her veins. They were unable to give it yesterday because of giving her blood and other stuff. She is greased from head to toe today. Thanks to all my friends back in the Upper Peninsula who are working on coordinating a benefit spaghetti dinner on the 21st.

2/4/13 at 1350 hrs - A busy last 24 hours. Katy had to be brought to the ER here last night because she could not sleep for her nap yesterday and her chest was still rattling. So we went down and sat in the ER for four hours. Grandma went back to the Soo a few minutes ago when Katy’s friend Rosanna flew in from Texas. So we are just swapping out friends for family every few days now I guess. Katelyn is doing okay I guess but her vent settings had to be brought back up and it does not look like we will be extubating her anytime soon. Other than that she is pretty well stable for the most part.

2/5/13 at 0840 hrs – Happy one month Birthday Katelyn! They are still struggling to keep her vent tube taped. Her poor little face does not like the multiple times a shift they are reattaching the tubing tape. They did switch to her lower lip which is helping some. Her poor little face just wants to heal.

2/5/13 at 1955 hrs - Katelyn did well today during her 1 month birthday. It looked like a party around her dressing change time. There must have been 15-20 people in and out of here working on her. They devised a sort of helmet face mask thing to secure her air tube. They cushioned around her head and tied the line carefully. It seems to be holding well and not being ripped off and retaped every few hours. Her body also appears to be healing up as well from all the blistering. The team this morning decided to reduce her amount of fluid intake and try to get the rest of the fluid out. We had a great visitor today. Rachael has Recessive Dystrophic EB and is doing amazingly well. She drove 20 minutes again just to see us and spent 3 hours with us and assisted in her dressings change by informing the team what works well for her. One product we had used on Katelyn apparently burns/ stings on open blisters and that was where they were placing it. We would have never known if Rachael had not informed us. Our little butterfly is covered almost completely in Mepatel. It does not dry out like the Vaseline gauze.

2/6/13 at 1120 hrs - Her pain is still an issue and they are trying to manage that the best they can before she gets extubated. I picked up Granny today at the airport and Sean is playing with her at the House. I guess he missed his Granny time. We are going out to get him a lunch box and some food for daycare. He is not eating their food so he can bring his own food and snacks. The Mepitel on Katelyn’s torso is falling off all the time so the night nurse wrapped her up like a dolly again last night. She even made a bow on her chin. I am headed north in a few hours to work this weekend so Katy will have to keep you all updated while I am away. It will be three days or so every other weekend for now to extend my leave.

2/7/13 @ 1:45pm (Mom post) - Her swelling has gone down significantly over the last few days, she is almost normal Katelyn again. She got a new setup for her breathing tube. No tape involved :) which makes mom very happy. It looks kinda weird, but it seems to be working well - and her face is getting a chance to heal. They started feeding her thru her G tube yesterday. She get about a tsp every 3 hours for the next 3 days, then they will gradually increase the amount daily. She also had a "normal" breastmilk baby poo, so we, the nurse included, were very excited about that. We are still working on managing her pain. The palliative care team increased her dosage of methadone slightly and spaced it out every 8 hours, so hopefully we can find the butter zone. Her skin is starting to look better, not nearly as raw. We've only come across 1 new blister in the last 3 days, and she's been handled quite often with repositioning and dressing changes.

2/8/13 @ 3:50 (Mom) - Not much has changed from yesterday to today. She is still on the vent, getting 1 tsp feedings every 3 hours, and is pooping pretty regularly. Her sodium level is creeping up on the high side. Aunt Roro flew home today.

2/9/13 at 2000 hrs -The burn team felt that the Mepitel was drying out her wounds too much and sliding off her torso all time so they have switched back to bacitracin coated Vaseline gauze for all of her dressings. The burn team does not want to continue her dressing changes now. The dressings will have to be changed daily on her whole body if they are using the Vaseline gauze because it dries out so fast. One benefit is we are able to do one limb at a time instead of stripping the poor girl completely down and waiting for a doctor to come view her wounds before redressing the areas.

2/10/13 @ 1022 (Mom) - My munchkin had a rough night last night. They found out her left lung is full of fluid. I'm hoping that she didn't aspirate any of her feedings into her lungs. The doctors feel she should be pretty protected from that, but when I saw her first thing this morning I noticed that she had stomach secretions in her mouth - basically she spit up, but with her being intubated and not being able to cough very well, who knows. They upped all of her settings on the vent to open her lungs back up and make sure she is getting enough oxygen. 2 steps forward 3 steps back.... I was able to have the burn team order Vigilon for her bum. She is swollen again too. Her eyes were open for a bit this morning, enough to see that I was here, then she went back to sleep. They also reduced her feedings again today back to the minimum amount just in case. Sean is keeping Gord busy in the playroom, while Shelia and I are watching the munchkin.

2/11/13 at 1300 hrs - Daddy made the long trip down last night in the bad weather. They changed her feedings to continuous and through her J tube instead of her g tube. One new development that Katy just learned was that the burn team will no longer be completing her dressing changes. They suggested we do it and do it twice daily for her entire body. Not to mention the work, but also the pain and suffering it would cause Katelyn is unacceptable. The burn team did not even train or attempt to train these ladies in the NICU how to do her dressings. We are going to rewatch the video on dressings for a baby on the Standford website for today. We are seriously thinking of having her moved to Cincinnati to be cared for by their EB specialists. It looks like another 4-5 hours south, but whatever is best for her is what we will do. I am sure it will not be an easy process, but we will have to see what we can do.

2/11/13 at 1915 hrs - We got the wheels rolling to see about moving Katelyn to the EB Clinic in Cincinnati. Who know how the insurance company will respond. Either way if I have to sell my car to get her there we will make it happen. Hopefully they will know what dressings might work better and the great nurse Geri already commented and agreed that twice daily dressing changes was not a viable strategy. Hopefully later this week we will hear from the Doctors at Cincinnati and our insurance about the move. We appreciate everything U of M has done but it is time to move for her best chance of coming home with us eventually. Her broviac line clogged again so Tasha had to get it to open back up. Luckily they were able to fix it for the third time.