Saturday, March 7, 2009

Home Sweet Home

Picture 4 & 5: Kenzies 2 main feeders
All pictures: Kenzie with some of her favorite KKI staff

Sorry I haven't posted an update but we have been busy here. I'm still working through unpacking all the crap we had being away for 2 months. Also, we are trying to figure out a good system to feel the most comfortable with feeding Kenzie here. Needless to say, we haven't sat down much in the last 2 days.

Kenzie's last day at KKI was mixed with emotion. Poor Kenzie didn't smile all day because she was in a Benedryl hazed stupor from the allergic reaction Wednesday night. Luckily the hives haven't returned. We probably will never know what caused it but as long as it doesn't happen again, I guess it doesn't matter much. We had breakfeast, a meeting, lunch and then packed up to go. As much as all I wanted to do was be home, I knew I was going to miss the friends I made there. I also knew Kenzie would miss how much fun she had everyday with all the other kids and in the playroom. I wish she had been in a better mood for her last day but what can you do.

More importantly Kenzie's stomach is still a mess. She is still having constant diarrhea and has now lost a pound and a half which is almost everything gained while we were away. We had to change her clothes Friday night 3 times while she slept because its so explosive that it just goes everywhere. To make matters worse, she is again vomiting up almost everything she eats. Meals are very trying and we are frustrated. We think its behavioral based on medical which means that Kenzie isn't feeling well so she really really doesn't want to eat. She forces herself to gag and vomit every time we present food to her. We are plugging along though and doing what we are supposed to... giving her every meal and not allowing her to win. We spoke to Kenzie's GI doctor and he said if we can't get a handle on the diarrhea by Tuesday, we will have to come in. We also went to her pediatrician who gave us tubs to collect her stool. We will test for CDIF, rotavirus and a bunch of other bugs she could have come down with while at KKI. Unfortunately, all these tests take days to come back so we just have to sit tight now. Of course our big fear is that this isn't something that will go away and somehow Kenzie has reverted to the issues she had since birth. We really are hoping at this point its CDIF because at least then we can treat it and move on. Our vacation to Puerto Rico is now questionable as its only 3 weeks away and if she is still not stable, its not even an option to go away.

The other bad news is that after months of Jordan and I worrying about Kenzie's length and being told to hang in... our pediatrician is now concerned. Kenzie is 16 months old now and has only grown 9inches since birth. She has fallen off her own curve and is not even close to the charts anymore. He wants us to see an endocrinologist. It's probably the only type of doctor Kenzie has avoided seeing so far. Another day, another worry...

Kenzie has been in a funk since we got back. She is cranky and whiney. I think its partially that she got so used to seeing her friends all day long at KKI and partially that she isn't feeling well. It doesn't help that I don't want to take her out now because I hate to think if she has something contagious, we would spread it.

I guess I should try and find some good news so that will be the fact that we are home!!!! Jordan and I are finally sleeping in the same bed together after 8 weeks apart and we have Chubby back. Kenzie loves having him around. I have a bunch of pictures to put up so hopefully I'll find time and energy to do it tonight. Fun Saturday night...

Thursday, March 5, 2009

keeping it interesting and going out with a bang!

As usual and like many of the kids who wind up inpatient at KKI, Kenzie likes to make a normal day memorable. Kenzie had her snack at 6:30 (sweet potatoes, oatmeal, and banana applesauce - nothing new about them) and then her great friend Miss Patti took her for a ride in the wagon. Patti said she noticed something red on Kenzie's face during the ride and tried to wipe it off but thought it must have been because she vomited during the snack. We put Kenzie to bed around 8 and settled in for our last night here.

At around 915, I noticed Kenzie in a sort of half awake, half asleep state. She was moaning and writhing around uncomfortably. Kenzie is normally a very good and sound sleeper. After a few minutes, I started to pat her back and talk to her. When that didn't work I told Jordan it seemed like something hurt her because of her movements. He noticed that she kept grabbing at her diaper. I did what I always do and climbed into her crib with her so we could "spoon" and she would fall back asleep. Kenzie kept taking my hand and literally throwing it off of her. She did not want Bunnie, her blanket she cant sleep without and wanted nothing to do with me. Now we really knew something was wrong. Because it seemed like she kept grabbing at her crotch, we thought maybe her diaper rash got worse and I told Jordan we should change her diaper. It was pretty dark in the room with just a low dimmer on but when I took off her diaper everything seemed really red. We turned on a light and immediately saw that (and she will kill me for using these terms one day) her labia were filled with hives and all swollen. Jordan turned on a light and we stripped her naked. As it turns out her whole body had hives and a rash. The scariest part was that Kenzie's face, mouth, ears, and neck seemed to get worse every minute. We called for the nurse and told her to page the doctor on call but luckily we keep baby benedryl around and gave her a dose.

With all of Kenzie's allergic type reactions she's had, they have all been digestive and have never been anaphylaxic (sp???). This was actually one of the reasons the team decided to put Kenzie inpatient. They were always afraid something like this might happen. The benedryl worked and luckily we didn't have to give her any shot because her airways stayed open. Within 20 minutes Kenzie was smiling and ready to play! She really is amazing. The doctor decided to switch her overnight feeds to straight pedyialte from formula because he was afraid maybe her batch had been contaminated and the pharmacy wasn't open to make her more. So now we sit and scratch our heads as to what Kenzie ingested that caused such a systemic reaction in her. We know because of her face, mouth, and labia that it was something she ate but we have no idea what. We will make sure this morning that the team downstairs didn't put anything in her foods different but are pretty sure that they would never. If you were to see the kitchen they cook Kenzie's food in, it's pretty amazing and totally sterile. Because they have so many kids with allergies, every kid gets their own station, cooking utensils, blender, etc. Kenzie's station and bin in the fridge are marked everywhere with "high allergy alert" postits. It has always been one of the things I am very impressed by here. They really take kids sensitivities with the utmost caution.

The only thing we can possibly think of is that the sweet potato was a fresh batch of food they just made yesterday. Maybe somehow it had touched something (they puree fresh vegetables for Kenzie)?!? But what... so now we have one more worry with Kenzie and might need to get one of those pen things to carry around because we don't know what caused this. We always said, and I think I was recently talking to my dad about it, that at least with kenzie, if she couldn't tolerate something... shed just poop it out. We didn't have the worry of a full fledged allergic reaction. Now we do.

I finally convinced Jordan to stop checking on her and go back to the hotel at about 11:30. He was sitting there with a flashlight examining her to see if the redness was going down every few minutes. The doctor here told us to give her benedryl every 4 hours all night and watch her. So needless to say, I have been up all night. The good news though is that I should sleep in the car and in less than 12 hours we will be home!!!!! I will make an appt with our immunologist/allergist as soon as I can get in to talk about what happened and see if he can figure out what it might have been but we may never know unless it happens again.

On a really positive note, our nephew Zachary found out he is going to get a baby sister yesterday!!! Tracee and Adam are so so happy! I can't wait to pass down some of Kenzie's dresses and buy her some bows! Congrats :-)

We are leaving here around noon and I sooooo soooo can't wait to get in my bed tonight. I will post pictures of our last few days tomorrow. Right now I'm going to get dressed and pack up! Have a great day :-)

Tuesday, March 3, 2009

SOOOOO OUT of here

So we are in our final hours at KKI. Unfortunately, our last week at KKI has not gone as we had hoped. Instead of making final tweaks and improvements to our therapies, we are really trying to just hold Kenzie's head above water. Kenzie's stomach bug has really put a damper on everything. She is cranky and cries through her meals and therapy sessions. She vomits a lot more than the norm and she is falling asleep in her meals because she is so worn out from the work it takes to poop, vomit, and gag. We have not been able to increase her volume at all, or get her back to the variety of foods she was on either.

Pretty much we might be better off an home right now. We are afraid because of the rancid smell of it that Kenzie may have CDIF but they won't test her here because they will need to put her on isolation. They also won't put her on the Flagyl preventatively that would take it right away if she does. We have an appt with Kenzie's pediatrician Friday so we can get everything taken care of then, but it would be much better if we could know now. That way she would feel better quicker if it is in fact CDIF. We are now seeing for the first time how a GI bug affects Kenzie as compared to healthy people and it's not so pretty. I feel bad for the poor thing.

So the last few days kenzie has thrown some nightmarish meals at us. Every time the therapists come out of the observation room they say we are dealing with it well... but it's very hard because we know she's just not feeling well and doesn't want to eat. I really cant blame her... when I have a stomach ache I don't want to eat either. Jordan and I realized tonight at dinner that her vomiting during meals is for sure behavioral. She is gagging and vomiting as soon as she sees me go to give her the first bite. As for Kenzie's protocol, we have made 1 final switch. Kenzie's drink and meal session will no longer be separate. Kenzie now gets 3 bites of stage 1 puree food, then 1 drink of formula (which is 1/8oz). She no longer gets "15 seconds of incentive" and now just has toys to play with throughout her meal. I think overall that will be so much better as it makes meals even a tiny bit faster and will seem more "normal" to the naked eye.

Hopefully I will post again tomorrow before we leave here about how Kenzie is feeling but if I don't I should say that although the last few days have been pretty depressing, our overall feeling about KKI is that we are so happy we came. If someone should ever ask us what we think about it here, we would recommend it in a heartbeat. Without KKI, we never would have gotten Kenzie to accept anything by mouth. We really don't feel that we could have done this at home. I would say to anyone that they should go in knowing that they will need to fight for the things they think are best for their child, but in the end if the parent and team here can compromise... it should all work out.

If I had to change anything about this place it would be the way KKI places value on parent suggestion and input. For many weeks we tried to get the people here to listen to us about Kenzie's unique tastes. She is very unconventional when it comes to music and toy choices. She craves structure where many kids do not. I do feel had they listened to us sooner, Kenzie's progress might be even greater. I also really feel like they should have some sort of support group for parents after leaving KKI. One of the best things about being here has been that all the parents get to be in it together. Finding good therapists when we get home and when we move to LA is going to be really hard. If there was a group somewhere online or off... parents who want to share information about good and bad therapists, horrible days, and their progress day to day can do that. I know confidentiality is an issue but it should just be something that is offered so that parents who want to can open themselves up.

We are so lucky we found KKI when we did. Most people don't make it here until their child is 3. By then, their behaviors are so ingrained in them that it is a part of who they are. We really believe that kenzie's post KKI transition is going to be even easier because of her age. We can't mention our therapists by name on here but really want to thank each of them for all the effort they have put into helping Kenzie. I think a few of them have fallen for Kenzie's adorable charm and she is for sure going to miss all of them and the friends she's made. Personally, I think Kenzie is going to be mighty bored when she gets back home and only has me to play with!!!!

Sunday, March 1, 2009

A Blip...

Well we thought we had a course of action for our last week here but Kenzie decided she had her own plan as usual. Yesterday morning we woke up to a fever, vomit and lots of what Kenzie's friend Lilly calls the "uh oh's" (aka diarrhea). The fever is now gone but the rest of it has stuck. The good thing is that because she had the fever, we know that this is not food related but some kind of bug. We are trying to get Kenzies stool tested for CDIF (she had it in June) because it smells pretty rancid. So instead of our usual 1oz of formula and 3oz of food, we have had to decrease to 1oz of food and 1oz of formula. Kenzie's vomiting during her meals was just out of control. Hopefully she will be better in a day or 2 and we can finish making the last bit of progress before we leave Thursday. We are so lucky though that only the fever and vomiting phased Kenzie. The "Uh-Ohs" are so normal to her that she doesn't even notice.

Jordan has been feeding Kenzie for the last 2 days and I have never seen him so nervous! It was actually pretty funny to see someone who performs surgery on a daily basis go into the room to feed his daughter. When he poured his first set of drinks for Kenzie, his hand was shaking like crazy. I was sitting in the observation room laughing at him. A meal or two later though and he is now a pro. Given that Kenzie hasn't felt her best she has been throwing him for a loop in there.

Grandma Daryl (Or MamEye as Skylar calls her) and Grandpa H (PopEye) came yesterday and got to see Kenzie for a day. We couldnt take her out because she hasn't felt well enough but we did get quality time here at KKI for our last weekend. Jordan and I literally are counting hours till we get out of here. We soooo can't wait to be home.