Summary (cont)

1/23/13 at 1315 hrs - Daddy is back in town. After driving all morning and forcing people off the roads all the way down I made it. I would never had gone if I knew my little girl was having a rough day. I felt guilty the whole night for leaving. Katelyn looks a lot better than I was expecting. Not sure what I was expecting exactly, but other than looking exhausted she looks the same. I knew we would be fighting infection sooner rather than later, but I did not think it would start out with something internal. I figured we would be fighting infections on her surface first. Shows what I know.

1/24/13 @ 1100 hrs - Each xray they've taken is showing improvement - so for now, it looks like she's going to beat it without any surgical intervention. When I came up this morning I noticed she's got a red tinge to the skin, almost rash like. It starts in her groin, and has been working it's way up her chest. She also had another transfusion of blood last night to battle her chronic anemia. Her dressing change went very well yesterday. We have an awesome burn nurse who's been coming all week, and I've been able to assist her setting up supplies and whatnot. Makes me feel like I am doing something for Katelyn anyways.

1/25/13 @ 1030 hrs - During her dressing change yesterday we ran into some more pain issues because of her NEC, painful limbs and infections. We ended up switching to fentanyl to manage her pain halfway thru. Her abdominal xrays show continued improvement of the NEC, she is on vanco and zosyn for that and they added fluconazole last night for yeast growth. She hasn't opened her eyes yet for a couple days, so when I see those peepers, I know she's starting to feel better. The RT's have to retape :( her breathing tube. Her central line was giving us problems last night too. After they administer the blood, the nurses were unable to draw back to do labs, they gave her a small dose of clot buster this morning that didn't work and were able to give her another larger dose, that did work - thankfully. The other option would have been to send her back to surgery to get a new central line inserted.

Brad and Sean are taking Granny to the airport as we speak :( She's been so much help to us over the last few weeks, and we can't thank her enough! He really enjoyed having her here to SPOIL and play with him ;) Katelyn's Aunts, Uncles and cousin from daddys side came from the UP and Hawaii, just to visit our munchkin.

1/25/13 at 1933 hrs - Katelyn did well during her dressing change today. They tried more of the new dressing on her arms and will check on its progress tomorrow. Katy looked at old wound photos and thinks her legs are healing well so that is good news. She is doing okay and is on her sides more since they found the wound to her head from not being turned enough. She looks pretty comfy on her side anyways. She spiked a fever of 103 degrees while we were over at the House eating dinner. Our nurse Tasha did a great job of catching it and bring it back down. Little Sissy is hanging in there but she does not look anything like she did a week ago. Poor little girl. Sweet little things like her should not have to go through this crap. I want to thank my mom for dropping her life to come and help us for the last 3 weeks or so. She was a great help controlling Sean and allowing us to come to terms with Katelyn’s medical issues. With how hard this has been I would not trade the time I have been able to spend with Katelyn for anything.

1/26/13 at 0930 hrs (Mom post) - Katelyn is 3 weeks old today!!! She has been getting a lot of IVF (IV fluids) and is looking pretty poofy this morning. Her little cheeks are huge. We have Bri Mason from Life on Paper coming out this morning to take pictures soon. I bought a little outfit for Katelyn to try and wear today, but decided to just put down a receiving blanket on her bed instead of trying to manipulate her into an outfit and cause her discomfort. We are in the process of developing a Facebook page with a link to donate to Katelyn https://www.facebook.com/SupportBabyKatelynLehigh . My cousin's fiance, Chrissy, is going to be helping us out with that.

1/26/13 at 1300 hrs - Added a donation tab to this website. This website and Facebook are the ways you can donate if you wish to. All funds will be used for Katelyn's care and supplies. If we have any extra or the worst happens we will donate it all to one or more of the EB organizations that have assisted us and thousands of others who have been touched by this condition. Here is a link to Bri's website with some of the excellent photos she took today. It is suprising how much better the pictures look when they are done by a professional. Thanks Bri! Her business is called Life on Paper. https://www.facebook.com/media/set/?set=a.10151388042464893.501390.174430499892&type=3

After seeing these pictures I think I am going bald with all this stress. Good thing I like short hair!

1/26/13 at 1950 hrs - Katelyn has over a dozen new blisters today all over her body and head from excessive fluid seeping from her veins. They are feeding her by TPN and trying to keep her fluids up, but it seems her blood is not holding on to it and it instead releasing it to her outer extremities. She is still one puffy little girl. The dressing change today took close to two hours and now that they are daily they are hard on her and her fragile skin. We now have 162 active followers and over 1800 likes from Facebook users, so Katelyn is becoming very popular. Our first job this week will be to try to get the same group of nurses routinely instead of various nurses we have to continuously train in her care.

1/27/13 @ 1430 (Mom post) - Katelyn still has a lot of swelling, which is causing her to have more blisters. Everywhere that wasn't wrapped by her dressings now has blistering. I only hope that we can keep the roof on the blisters and they can heal quickly. Her sodium level was really low, so they ended up giving her additional sodium which caused her to retain fluid. She now has too much sodium so they are hoping that by cutting back that she will start to pee out the additional fluids. I have the feeling the swelling is going to get worse before it gets better :( Brad's coworker from D-town, came over today and took us to lunch at Zingermans, which was awesome by the way (thanks Jill!). Then we went out to the Ann Arbor Hands on Childrens Museum to play and let off some steam. Sean had a great time, and I have to admit the adults did too ;)

1/28/13 @ 1000 (Mom post) - Katelyn's blood pressure was running low when I came into her room this morning and they were in the process of inserting an IV into her scalp :( It sounds like this is just a short term thing, we may need to send her back into surgery to get another central line installed so she can receive different fluids at the same time. The IV went in easily and she is getting a bolus of fluids now, so hopefully we will see some improvement soon.

1/28/13 at 1845 hrs - Katelyn has that IV line in her scalp now and is still bloated looking, but her blood pressure came back up. We took Katy and Sean to a local clinic to have their coughs looked at and it turned out to be an entire day event. Katy still has bronchitis, she had it before having Katelyn and I guess it never got better. Sean had play dough in his ear and it took four of us to hold him down and dig it out. It was a huge piece all the way in and removing it must have hurt terribly. I never heard the poor kid scream as loud as he did today. Broke my heart to hold him down, but we did not want to puncture an eardrum. His poor little ear bled afterwards and anything coming near his head freaked him out. You can tell he is my boy because a trip to the store for a new toy and he is as happy as a ham. You wouldn’t even know he had a rough day by looking at him tonight.