Katelyn is loosing a lot of fluid from around her G tube site and out her G tube. The surgical team came by about an hour ago and figured the J might have slipped back into the stomach. They recommended a study be done to find out for sure. More bad news is that she is barely peeing at all. Most likely a strong indicator that her kidneys are shutting down. The team has been in and out a few times today assessing Katelyn. We just have not been updated as of yet. I will update once they make rounds or advise us of our next move.[...]

[...]

The main doctor on our team made a visit to Katelyn's room a few minutes ago. he said her lungs and kidneys have not improved and was preparing us for the worst. He was also trying to gauge what we wanted done if things go south. Katy is just about to hold Katelyn again for a few hours. i told her we better enjoy time with Katelyn while we can. We are hoping for the best but trying to prepare ourselves for the worst. We have experience in loss so we are not looking forward to this crap again. It gets hard to think of the positive in these types of situations. I will update if we find out anything new. Thanks for your continued support and prayers.[...]

Katelyn did not have anything unusual happen overnight. Her kidneys have lowered some of her toxin levels but her creatinine level is still raising which means her kidneys are shutting down. They are still trying to get the levels down but the options are dwindling. Katy will get to hold Katelyn again tonight after her post-partum appointment this afternoon. It is a good thing she made a backup appointment down here since she missed her last one in Petoskey due to bad roads last week. The doctors this morning at her follow-up visit to our ER visit last week thinks she might have Whooping Cough. So they gave her a Z pack and some other meds for controlling her ovarian cysts. The medical drama has not slowed for Katy or Sean yet either. Katelyn has been resting much more comfortably the last day and a half so that is good news. Sean has been a little terror the last few days since returning from home. I am not sure what his problem is but it could be due to having all attention on him at home and most of it here on Katelyn. He is supposed to be napping with Granny over at the House, but I doubt that is happening. He has not napped the last few days and instead beds down early. He is getting old enough he may stop taking naps soon. He has not had a wet nighttime diaper in weeks so I think we will be in undies all the time soon. I am so proud of him and amazed at how fast he is growing. I will only report back if I have new photos or information this evening. We are still heading north tomorrow evening unless something changes.[...]

Somehow Katy convinced the team to let her hold Katelyn while they changed out her isolette. I have not seen Katy this happy in a long time. She could not stop smiling. Katy started holding her in a chair on a pillow at around 1650 hrs and is still holding strong. Katelyn has been very relaxed and seems to be pretty happy as well. They actually had to turn her vent settings down quite a bit in the last hour because she keeps high stating. I added a dozen or so pictures of the event and some pictures Sean and Mom took the last few days. I think they want to offer me a surgical tech job here since I am such a good little helper during dressing changes. I told them maybe in my retirement! The munchkin received some more blood cells and that is about it since I posted last. I will update tomorrow as usual. A special thanks to Nurse Tasha for making this happen after 7+ weeks. It was long overdue![...]

Katelyn has been working hard to get better and has lowered some of her kidney toxin levels. They are still quite high but have shown sings of decreasing for the first time this week. We arrived this morning and were surprised to find out that her dressings were all sliding off and one arm was completely unwrapped. So we had to start out redressing one hand and then at 1330 hrs we redressed her whole body. The doctors decided to try morphine again since it has a longer half life. She only needed 3 doses of morphine instead of the 7-9 doses of fentanyl we were having to administer. She is fully wrapped and resting comfortably. It was one of the fastest and easiest for her to tolerate. It appears they are starting to dial in her pain control methods. We have three different dressing types on now: Vaseline gauze, mepitel, and we are trialing Hollister Brand Restore gauze on her right leg to see how it performs. We also changed from Vaseline to aquaphor. I was surprised at how much tackier the aquaphor is. It does not appear that the dressings would just slide off as they had with the Vaseline. I am unsure how fast the aquaphor dries. We are hoping it hold moisture longer than the Vaseline. It will be nice if it does so we do not have to worry about the Vaseline gauze as much. Katy and Sean have kept me busy the last few days. Depending on how Katelyn is doing everyone but Katy is headed home on Wednesday night for Katelyn's benefit dinner on the 21st. I have to work this weekend as well. We will just have to see how she is doing. Katy really needs some rest and relaxation. We are all getting a little stressed out especially now with her internal issues and unknown future. I am ready to get off this roller coaster of emotions. I am growing my version of a goatee for Sean and a large portion of it is grey hair. I think I will have to shave it soon to hide my stress. We had two primary nurses last night fighting over us. Well not really, they were working together to take care of Sissy overnight. Julie's mom baked some awesome chocolate chip cookies for us and we have been pigging out on them all night and morning. Maybe Elisabeth wants to try to top that???? I'm just saying food we likey! If there is anything new tonight i will post again otherwise Happy Presidents' Day![...]

The team just came in and sat down with me and explained they are concerned that Katelyn's systems are not responding to treatment as well as they had in the past. Her body might be losing the fight. She is quite comfortable or at least she will be until we do her dressing change. The next few days will tell us a great deal. Katy is about an hour out so that is good. She can help with the dressings change. We will hold onto hope, but I wanted to advise on what I had learned.[...]

Katelyn had more problems with her Broviac line not drawing labs last night around 2300. It opened back up once again and it okay now. They are increasing her feeds once more through her J tube. Her kidneys are not building up toxins and other stuff. They do not want to overload her with fluids to flush the kidneys because most of the fluid she gets leaks out her arteries and into her chest and surrounding tissue causing more blistering. We just cannot seem to get anything easily. We are planning on doing her dressings change at 1600 hrs today. Katy should be back for them to help since we have yet another new nurse. I can only assume we will have seen all of them soon at one time or another. Katelyn seems a little more comfortable today with the increase in methadone yesterday. Her white blood count just keeps climbing and they are not sure what is infected. She is on two types of antibiotics already. They did get a culture to grow from her breathing tube but they think it might have been contaminated results from the tube and not her lungs. Either way they said the current antibiotics will cover it anyways. I will be headed home Wednesday night with Sean and Granny. I have to work and Katy needs a little alone time to relax. There is a benefit dinner my friends back home are putting on for Katelyn that we will be attending as well on Thursday. Hopefully it will go smoothly. I cannot thank everyone enough for all they have done.[...]

01/05/13 @ 0750 hrs- Mommy wakes dad and Sean up due to profuse bleeding, ambulance ride to War Memorial Hospital, Katelyn Marie born (32 weeks gestation) at 0958 hrs, weight 4 lbs 4.5 ounces, missing 40% skin and more sloughing off.[...]

1/16/13 at 1500 hrs - She was awake and alert for the first part of the morning and was resting until 1400 hrs when the trauma burn team came back down to change her dressings. She did not like her dressings changed as you would expect. It was nice to hear her cry even though we knew she was in pain. Her cry is still not very loud yet. The gauze stuck pretty bad still and this time made her bleed which was hard to see.[...]