Summary (cont.)

2/12/13 at 0945 hrs - Anybody in the market for a house in Pickford, MI? Or can hotwire an ambulance? I guess we will have to put on our boxing gloves with Blue Cross Blue Shield to pay for the transfer to Cincinnati. I already told the folks here we are moving ahead if I have to sell everything I own. Hopefully the folks in Cincinnati are well versed in her JEB-PA. I can only assume it will be a much better setup.

2/12/13 at 2050 hrs - Mommy did the entire dressing change today with the help of a couple nurses and it went pretty well. They increased her overall Methadone dose to try to reduce the amount of morphine and fentanyl they give her during changes. She only required 4 doses of fentanyl instead of the 7-8 they normally would give her. Hopefully we are starting to manage her pain better. She did most of her own breathing g today as well even though they increased her vent settings to try to clear her lungs of fluid. Katy was informed today after the dressing changes that they will not transfer Katelyn until she is extubated and off the broviac line. She has been so dependent on that broviac line I would be surprised to see her without it. I know they could give some meds through her G tube, but that seems to be moving a little fast considering she just recovered from NEC and started feeds again. I assume it is Cincinnati wanting her healthier before taking over care, but who knows. Having to manage and do most of her dressing changes is really putting a lot of stress on Katy and I now. Nono (Granny’s Husband) is in town now too. Some positive news is that Katelyn’s skin on her torso and some on her face is healing nicely from all the blistering a week or two ago. Her poor little legs were still dry with the Vaseline gauze after only one day. I guess a couple spots still bled when they pulled the gauze off. Katy was reading online that you should coat the mepitel like we do the Vaseline gauze so it stays moist. Maybe if they would have done that her dressings could have stayed mepitel.

2/13/13 at 1140 hrs - The team stopped her feeds this morning because of leakage around her G tube. Sean is on an antibiotic now too for a play doh ear infection. The poor kid has a fever and ear ache. Not to mention a runny nose and a cough too. They are going to try to just change her entire body once a day instead of her trunk being twice daily. This is to minimize her discomfort and the need for additional pain meds.

2/13/13 at 2130 hrs - We had a long discussion with the team here and did not make a ton of new progress, however we did find a middle ground and are a little more comfortable than we were a few days ago. We decided to try using the mepitel again but coated with Vaseline to keep some of the moisture in as someone in the EB community suggested. It was harder to put on her small limbs than the Vaseline gauze was but never stuck to her skin like the gauze does after just one day. It is amazing how dry her legs get after just one day even after we slather on the Vaseline. Her trunk, hands, feet, and head still get the Vaseline gauze. We will try to stretch those dressing changes to daily as well to minimize her discomfort and allow the skin time to heal. No real progress on her G tube. The surgical team said they could not do anything for it so they decided to move ahead with feeds again and see what happens. Since they are using the j tube it should not affect her tummy much.

2/14/13 at 1200 hrs - Happy Valentine's Day! Katelyn keeps accumulating fluid in her lungs every few days. She seems to clear them after a day or two on her own. They think she might have some blockage or sloughing going on in her lungs so they are going to try to get the pulmonary team to take a scope in and look around. Meanwhile her kidneys want more fluid. They do not want to overload her lungs by just giving her more total fluid, not to mention cause more blistering as it did a few weeks ago. We just cannot seem to get any one system online and happy without upsetting something else down the road. We are now in total control of her dressing changes and have Mepitel on her limbs and may try Restore brand products next if we are not happy with the Mepitel. They increased her feeds again to 8.6 CC/ hr through her J tube. The Kidney doctors are not worried about her fluid levels and toxin build up yet. They would like her kidneys to be happy, but not if it means overloading the lungs with fluid. Mom and Sean ran into a bunch of snow just a few hours north so I hope she takes it slow on her way home.

2/14/13 at 2250 hrs - After speaking with pulmonary it does not sound like they will be scoping out her lungs just yet. They would need to put in a larger airway tube and possibly suction to be able to see. They are afraid the suction would do more harm than good. We greatly appreciate Nurse Tasha and the others who have been devoted to Katelyn's care.

2/15/13 at 1045 hrs - Katelyn has a high white blood count again and is being started on antibiotics while they culture some of her blood to see what the deal is. Her lungs are still fluid filled and they do not want to drop her vent settings at all.

2/15/13 at 2045 hrs - My brother and his family made the trip down today from the U.P. of Michigan. The roads were still really icy, fortunately they made it safely. It was Aunt Jamie's first time to see Katelyn. The dressings change went rather well today. Burn made us strip all of her dressings so they could swing in and see quickly, which I hate because she suffers more than doing them one limb at a time. Thankfully we had a team ready to wrap her back up. It took a little over 1.5 hrs to do her entire dressing change not counting prep and clean up. She is up to 8.6 CC/ hr on feeds, however her G/J tube hole is leaking and it looks milky in color now so we are not sure if it is backing up in her intestines or what is going on. We are in a better place than we were 12 hrs ago, but not any better than a few weeks ago. We seem to have stalled out at around week 3 for some reason. Our dressing choice is working well as we only had one little area that bled. Unlike the last few where they pulled all of her healing tissue/ skin off with the dressings. One more thing that changed was they decided not to pull any fluid from her chest due to the infection risk and some other factors.