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.[...]

1/29/13 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[...]

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.[...]

2/12/13 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.[...]

2/16/13 at 1300 hrs

So I spent the last 16 hours give or take off and on trying to condense Katelyn's blog. I have the last month and a few days summarized from over 26,000 words to fewer than 10,000. I also reversed the way it read so it is now chronological from birth so it is easier to follow if you are new to the site. The bad news is that I cannot get it to upload and I already removed the old posts. I will find a solution eventually, but wanted to update on our little girl. Katelyn had a little issue this morning at 0930 hrs when she extubated herself and coded. The team rushed in and reintubated her with great precision. She is still uncomfortable but her stats are back up. The team was surprised how calm I was. I had to inform them this was not my first rodeo. Her broviac line also plugged early this morning from all the blood cells they gave yesterday. normally they can clear the line with a clot busting medicine, but it has not been successful yet. The broviac is allowing fluids and medicine in but will not allow them to draw labs and run tests. they normally can handle that for about 24 hrs before they start to worry about Katelyn's fluid balance. They are consulting with surgery and we will have to see. It is snowing outside again and windy so it should be a fun trip home for my brother and his family. [...]

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. Granny is happy to see his two kids for a day before they head back north tomorrow. A couple of them are sick so hopefully they don't infect us while they are visiting. It was Aunt Jamie's first time to see Katelyn. I added a few more photos today after the dressings change and a few pictures of our little EB Angel Evan James's leaf we purchased at the Ronald McDonald House. They have two trees on one large wall where you can get a leaf to remember a loved one. It is hard to believe it has been over two years since we lost Evan and this baby was going to be our last try anyways. Katy has gone through so much in the last 4+ years to have our three beautiful kids she could fill several books. I always tell her she will be an even better nurse since she has experienced most medical emergencies and issues, twice! I am so thankful I have a good job and we have insurance or we would have been broke living on the street with all of our medical bills a long time ago. Medical insurance is one premium I pay that we actually get some use out of. Anyway some day I am going to have Katy sit down and log all of the crap we have been through over the last few years so others can see just how much a person can put up with and still be okay. So many people complain and worry about some of the stupidest things. One thing we will never do from now on is complain or fuss over the little things. We only have so much time to live so why not enjoy what little time we have! I could die tomorrow and have very few complaints other than I would have wished to spend more time with my family. Sometimes I wonder what little Evan will look like in Heaven. Will he be a sweet little baby as I know him or a man? I cannot even type this without tearing up with all of the emotions and love I have for him. I just hope the resentment and anger I feel will not get me thrown out when I get there. I definitely have a few choice words to share with whom ever controls this mess we call life. There is only so much a person can take and I hope for my sake I never reach that point. Until you suffer loss and crap like this you never really know how it will affect you and I wish nobody would have to in the first place. So as I have always tried to do I will look at the glass as half full and be thankful for the children I have living and dead. Hopefully the future holds brighter days for us all.[...]

Below is a link to a special on a local New york station on a fellow EB baby named Easton. It might be close to what Katelyn can expect when we get her home.[...]

1/23 @ 1400[...]

Below is a short video mommy took of her when she had her eyes open after changing her bedding.

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At 1200 hrs Katelyn went TUBELESS! Well she got rid of her breathing tube. [...]