Week 6 (cont.)

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.

I did not intend on writing anything close to that much rambling. I do not even talk to Katy about stuff like this so I suppose the blog may help me deal with some of the unresolved feelings I still have.

Back to my sweet little butterfly. 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. It takes about 3 hours to do the entire thing. They are giving another dose of red blood cells and started her feeds again at dinner time. 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. it just does not seem necessary to justify the risks at this point. We are much happier with the team here at U of m again. I think burn is who gave us the bad vibe and made us want to move to Cincinnati. I am not sure if they can offer better care, however I am sure they could provide better dressings than they were here. now that we control the dressings I am positive we will see improvement in her skin. I just hope the rest of her body hangs in there and follows suit. Keep the prayers coming and thanks for tuning in!

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. They are also going to give her more blood because she is becoming anemic. We were last on regular rounds today as there was so much activity to start the day with x rays and such. We also need to change her dressings sometime today with all of this other stuff going on. Her lungs are still fluid filled and they do not want to drop her vent settings at all. They stopped her feeds for fear of intestinal issues or blockage. They plan to restart them later today at the same levels they had been at to keep her fluid and nutrition levels up. They also plan to try to extract some of the fluid from her lungs or chest are to test to see what it is and how they can best treat it since they cannot scope her lungs out. We just cannot seem to get in a better place without something coming up. It is readily apparent why many of the JEB kids do not make it through their first year. It would be nice if she had a chance to heal something. It will be a busy day with all of the different medications and blood since she only has one entry point for it they have to alternate what they give and prioritize it. We keep struggling with the darn single Broviac, among other things. I spoke briefly to Katy this morning to update her, but did not hear how her night went. Hopefully she got some good rest. Sean does not always make resting easy. I will update later this evening after we have accomplished as many of our goals as possible.

2/14/13 at 2250 hrs

Katelyn had a rather uneventful day. 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. They were going to speak with our team this afternoon so i should know more tomorrow. Since nobody came back I figured the answer had been made to hold off. She is breathing a little better now so the fluid may be leaving her lungs again. We will be doing a dressings change tomorrow afternoon. Katy will not be here for it so I am thankful we will have one of our regular nurses who has worked very hard at keeping Katelyn progressing. We greatly appreciate Nurse Tasha and the others who have been devoted to Katelyn's care. It has only been half a day and I already miss my boy. I know Katy would be worried even more if I was not here so I am happy to stay with my little girl. I hope Katelyn is as alert tomorrow morning for me as she was this morning for Katy. It has been awhile since we had the joy of staring into her beautiful eyes and enjoying her watch us and track our movements. I hope Katy and Sean rest up and come back energized. Being away from home and dealing with all of this has definitely sapped some of my energy. Katelyn is worth every bit of it! 

2/14/13 at 1200 hrs

Happy Valentine's Day! Katelyn did not have the best night last night. She needed higher vent settings again. She 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. I will report back once we know more about Katelyn's lungs.  

2/13/13 at 2130 hrs

Katelyn had a pretty uneventful day other than her dressing change. 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. Her breathing is still awesome so maybe we will be able to check one problem area off the list soon. It would be nice to hear her talk again. Katy is feeling bad and not sure if she drank enough after sitting under the heat lamps for 2 hours changing Katelyn’s dressings. She will not be driving home if she does not feel better tomorrow. We are still working with new nurses but most of them have been exposed to her by assisting at some point in the last month so they are not having to be totally trained. I will have to coordinate and assist in Fridays dressing change so that will be interesting. I am sure we will be getting better as we do more of them. It was a little sketchy earlier, but we got it done without too much hassle. Katelyn has one raw and tender back. It is like one big giant blister was back there. We will have to ensure they are putting her on her sides more often. I will report back tomorrow once Katy and Sean leave and the doctors do their rounds.