Summary (cont)

1/29/13 at 1148 hrs - We spoke to the Pediatric Palliative Care team about Katelyn’s pain management and any needs that we had. It sounds like we have most of Katelyn’s primary care nursing team assembled so that is nice to hear. Her poor little body is covered in blisters or sores now. It is hard to believe just a few days can make such a difference to her appearance. She is so swollen that she cannot even open her eyes. Katelyn’s central line is plugged again and they cannot draw labs out of it. Blood clots the end like a one way valve and seals it when they try to draw labs (They draw labs every few hours to check her stats). They are trying some more clot busting drugs to see if they can free it like they did a few days ago. They are hoping the Mepitel will last a few days so they only have to change her dressings every few days or twice a week instead of daily. It takes a lot out of her

1/29/13 at 1800 hrs - Katelyn did not have a bad dressing change today. It only took 45 minutes and our lovely nurse Lauren took over in our stead because we were out checking out the daycare for Sean. It is pretty nice and Sean is headed there the next two days. They were not able to free up Katelyn’s central line with the clot busting drug so they are discussing replacing it surgically or trying the clot buster once more. The benefit of another surgery would be that they could insert a double line and we would have more ports to run medications. Her swelling looks a little better tonight now though.

1/30/13 at 0921 hrs - They were able to get her central line unclogged this morning and drew some labs. They also removed the IV from her head last night. The nurse last night wrapped Katelyn up from head to toe. She spent her two days off studying online about EB and how to best care for them. She has good intentions, but I think she may be a little too aggressive. We are not just dealing with EB, but a multitude of other internal issues as well. Most of her skin was not an issue a week ago. In the last week that has changed with all of her blistering. Katelyn was a little wigglier this morning and tried to open her eyes when mom came in the room. Granny bought her a noise machine we mounted to the back of the isolette that we hope she can hear and help her relax.

1/30/13 at 1930 hrs – Today the girls had to unwrap Katelyn from the night nurses mummification. She did not care for the added attention, but they did find and lance numerous new blisters. Poor kiddo. She is peeing a bunch so hopefully her swelling will be done with soon. She does look a bit thinner than she did a few days ago.

1/31/13 at 1015 hrs - Last day of January already and Katelyn is almost a month old. She had an uneventful night last night with another wonderful nurse. Nurse Elizabeth had her looking pretty comfy this morning. They are going to give her more medicine to try to get the fluid back into her blood vessels today in addition to her TPN fluids and nutrition. We will be meeting with the new team of doctors that will be treating Miss Katelyn this afternoon. They will try bringing down the ventilator some to see how she handles herself and hopefully in the next few weeks the can extubate her and start feedings again. They are not sure if her case of NEC was just a single thing or a sign that she has internal sloughing, which would be bad. Katy and I are still looking forward to holding her soon. Hopefully we can get her breathing on her own and go from there.

1/31/13 at 1905 hrs - Katelyn opened one swollen eye for about 10 minutes part way through the day to see what was going on. She cannot open the other eye yet due to how swollen her face is. The swelling took another casualty on her face as well. Her tape holding her breathing tube ripped free and both cheeks now have no skin on them. They do not look like happy cheeks to say the least! They better pull that tube soon or she won’t have any facial skin to hook to. Grandma made the trip down and avoided the 30+ car pileup on the freeway coming down. Sean was happy to see her.

We also had a great visit with another gal dealing with EB. Both she and her son have a form of Simplex EB. Both she and her husband had a great deal of knowledge they shared as well as their story. She recently had an amputation due to a common EB problem, skin cancer. She is one of the first with EB to try to use a prosthetic device.

2/1/13 at 1040 hrs - Katelyn had a bit of a rough night last night with pain. She is being changed to methadone instead of the morphine she was on before. Apparently it takes some time to build up in her system before it helps and will eventually be a more steady pain med with fewer ups and downs. Her poor cheeks and face are all tore up from the vent tube tape. They lowered her vent settings again so hopefully she will be off of it soon. She is very juicy from all of the blisters and fluid draining. They are constantly having to change her bedding to keep it clean.

2/1/13 at 1945 hrs – Katelyn’s dressing change took almost two hours again and they once again stripped her bear and waited around for a doctor who never showed. They ended up using an Ipad and showed the doctor the video shots through some web service. We were not impressed, however this time she was not failing and bleeding everywhere this time. She looked like an uncooked turkey because of the dressings have holes all over that made her skin bumpy like a turkey. Her wounds looked moist and looked like they were healing some. Her right leg is looking pretty good and the left is still a tiny drum stick. She had some trouble with pain because of her medicine change, but they dosed her up and she looked a lot more sedated and relaxed part way through. Hopefully we will be able to hold her soon and start to bond like every mother/ father should. Katelyn tried to open her poofy little eyes numerous times this morning, but could only manage to open them a little bit off and on.

2/2/13 at 1100 hrs - Katelyn is looking really exhausted and juicy. Her poor little body is so blistery and draining everywhere. They still do not have her fluids under control as she is still a bit puffy. Her poor little face keeps shedding skin and making them retape the darn breathing tube a couple times a day. I am hoping her skin will stop blistering soon so she can start to heal. Her bandages from yesterday are already all gross looking from her juiciness. Poor little kiddo. Grammie and Katy’s sister and niece are almost down here now. Another couple days on the antibiotics and we can address her being fed again through her J tube and see how her intestines handle it. Hopefully her intestines do not slough. The ENT guys said her airway looked great when they pulled the tube the last time so we can hope that is the same this time.

2/2/13 at 2000 hrs - Katelyn is having more trouble with that darn breathing tube and her pain management. It must take a while for the methadone to take hold as they have been having to chase her methadone with another pain killer to keep her comfortable. With all the skin breakdown and fluid leaking she must be in a ton of pain. Some good news is they were able to give her some more blood and she appears to be almost back to her normal size. Most of the excess fluid has drained or made its way out another way. We spent the afternoon at Chuck e Cheese where Sean and his little cutie of a cousin Alexis played their hearts out. Then we went to the hotel where the splashed around for a few hours in the pool. We had an EB friend stop by the hospital today, unfortunately we were out and about and missed meeting with her. Hopefully she will return another day to visit.