C-Diff Again?

C-Diff

Well we had to have Kylee tested for C-diff (the bad bacteria that took over in her gut from all the antibiotics) again this week. We were just doing our 2 week follow-up to make sure it was gone. We were sure it was going to come back positive because she has had horrible diarrhea for weeks and the worst looking bottom you have ever seen. Well....the test came back....negative. No way. I told her pediatrician I can't believe it came back negative. It looks and smells like c-diff. She told me to call GI because she ran out of ideas to use on her bottom and to stop the diarrhea. I pretty much spent my whole Friday on the phone with GI. They first thought they wanted to try a new cream for her bottom which of course no one around here has and they have to order it and can't get it until Monday or Tuesday. Then they decided to switch her milk from Peptamin Jr to Peptamin Jr with fiber....I know I said fiber... when she is going to the bathroom 4-5 times a day. I guess they figure because she is getting a slow drip all day that the fiber will bulk it up instead of making it looser. It won't stop the # of diapers but at least make it thicker. They also couldn't find anyone that has the Peptamin Jr with fiber and we have to wait until later next week for that also. Then they called back and decided that they think she may still have C-diff and that it is very difficult to get a positive sample when the stool is so loose. I said I totally agree because I feel like it looks and smells like C-diff. So they decided to put her on Vacomyician instead of Flagil as the Flagil didn't work last time. Well wouldn't you know it...no one carries Vacomyician. Walgreens told me they only have a tablet or injectible. Well the nurse called around and said Thedaclark could make us up some to last us until Monday and then Walgreens will order the liquid for us on Monday. So...hopefully we can get rid of the #2 diapers and the bad diaper rash.

"Little Room"

Well we got our little room this week for Kylee. What can I say about it......so not worth $2800. When they brought it out I told Jason to help her carry it in and she said this is all of it. I couldn't believe this little box with a bunch of "junk" hanging from it is worth $2800. The "junk" is a tin can with string hanging from it, a sewing hoop with Kylee's lovey hanging from it, a flower necklace, bells hanging from a string and a ponytail holder with material on it. It is really hard to describe so I am going to try to post some pictures later so you can see what it looks like. It is just crazy how much money people charge for items just because it is for a child with special needs. The rest of therapy went really well this week. None of them have seen her for weeks. Maybe even a month or more. So they were not sure what to expect. They all thought she looked really well and was very active so I was happy to hear that. It shouldn't take her too long to get back all her skills she lost being sick.

Nurses

Well it sounds like we have most of the paperwork done for the new nurses and to get our regular nurses recertified. Our regular nurses are approved until April 30th. They have to get reapproved every few months by the state. Basically they just check to make sure that she still requires nursing care. I can't wait to get our new nurses. It will be nice to get out once in a while. One of the nurses is going to do one night a week and the other one is going to be our on-call night and weekend nurse if we need someone. I went out Wednesday with Kelly Kling for supper and a few drinks and it was so nice (Thank you Kelly). It was well over due...it is just nice to get out and have some adult conversation once in a while. We also have a wedding coming up in a few weeks for Jason's cousin and Kylee is going to stay home with our nurse Marsha and Keegan is going to my parents and Collin is coming with to the wedding. So excited about that also. Hopefully things are starting to settle down and we can get back into a "normal" routine. I love routine :)

Weight Gain

Weight Check

Today was Kylee's first day out and about since being home from the hospital last week (big trip...we went to the Dr and Walmart). We took Kylee for her one week follow up with our pediatrician and she gained about a pound. I was really surprised. I didn't figure she would gain much of anything yet. I figured it would take some time for her body to get back on track before she would start gaining. Our pediatrician thinks the diarrhea she is having is more from the GJ tube then from the c-diff however she said not to be surprised if she does get the c-diff back again as there is about a 30% chance that she will. I guess once you get it you are more likely to get it again and they try not to give you antibiotics unless you really really need them. So with her having so much diarrhea she has a really sore bottom. They made up some medication for her that is a mixture of several different things. I know part of it is a cholesterol medicine but can't remember what the other 3 are. They mix it all up and you spread on. It is suppose to be really good so hopefully it will clear it up. It hurts her so bad that when you change her diaper she lifts her butt up and cries. I said about the only good thing about it is that she is giving her legs a work out which normally she doesn't put any pressure on her legs. We also found out that we can go to ThedaClark to have her GJ tube replaced if she pulls it out or when we need to replace it every 3 months. With her G tube I could change them out myself at home but with the GJ tube she has to have it done in radiology so that they can make sure it is down far enough in the intestine and placed properly. So that saves us a two hour trip to Milwaukee for about a 5 minute procedure.

Bath Chair

Our DME guy came out on Monday and fitted Kylee for a bath chair. I am very excited about it. It stands about 1 inch high so she can get down in the tub and soak in the water. It does come with a base that makes it stand out of the water but I don't for see we will use that any time soon. It is very portable. It folds up like a lawn chair so that we can take it to the beach and to a toddler pool. I think we will get a lot of use out of this. It offers great support around the head and chest which is what she needs right now. You can also lay the back of it flat or at all different angles. He said that the state has been paying for most of them that he has sent thru this year. He said he is sure our primary insurance United Healthcare will deny it but he said he would give it a try. They say it is not a necessity. So hopefully one of them will cover it. If not we have become eligible again for our family support money...which completely surprised us. They told us not to expect again for a couple of years.

Therapy

We took the week off of therapy this week so Kylee could get back on her feet. We are starting back up on Monday. She will be getting Speech and OT this week and then our service cordinator is also coming out. She is bringing out something called a little room. It is a box about the size of a kitchen table. There are many different items hanging from the top of it. You put Kylee on a board that has wheels and you slide it underneath it and then you can't talk to her the whole time she is in it. You just watch to see if she goes for certain toy all the time. If she does then you move the toy to see if she goes to the new place you moved the toy or if she still goes to the same place the toy was. This will teach if she likes something if she will explore to find it or if she goes to the same place because that is where she can see the best. She is considered to be legally blind however she can see some with her glasses we are just unsure how much she can see. This little room is a very expensive item. It is about $3000.00 and we are loaning it from the state. It also provides great sensory input.

We also have been practicing sitting the last 2 days and she is doing pretty good. I don't think it will take her long to regain her strength and skills that she lost when she was sick. She is already rolling all over the floor and Jason and I are chasing after her with the IV stand so she doesn't pull the feeding tube out. I will be so happy when we can reduce her feeds from 24 hours a day to 20 hours a day.

New Girl

Well we have been home for a few days and things are really going good. Were falling into the routine of being fed 24 hours a day pretty good. Not as hard as I thought it would be. Our biggest adjustment is that we brought home a new girl. She has a personality like she has never had before. She cries real tears which we didn't even know she could. She usually cries when she is tired or when her and Keegan are having crying competitions to see who can cry louder. She also has moments of being very happy and smiling and laughing and just full of life. She also likes to just sit and "talk" and she "talks" loud but with 2 boys in the house that also like to talk I guess she has to talk loud or no one would hear her. We are thinking the new personality is coming from the fact that she is getting all her seizure meds. With throwing up all the time she was only getting some of the medicine and not the full affect. We are trying to video tape her so others can see how well she is doing but whenever we turn the camera on she stops. Stinker. So all and all things are going really well. Just happy to have us all together.
We have kind of a busy week this week. Monday our DME guy is coming out to fit her for a bath seat. We want to get one that she will be able to sit in the actual tub because she loves the water. She is just getting to long for the baby bath tub. On Friday we have to take her for her check up because it will be a week that she has been out of the hospital. Can't wait to see how much weight she has gained. Thursday I am going to Monkey Joe's with Collin's pre-school class. Can't wait for that. It should be alot of fun and then one day this week we really need to get Keegan in for his 6 month pictures. He will probably be the oldest "6 month old" on Grandma Janice's wall. I also need to fit work into the schedule somewhere :) Life has just been so busy.
Thank you once again for all the support and kind words. Jason and I always enjoy reading them.

Kylee's Coming Home

I know everyone has been waiting for this. YES Kylee is coming home today. They should be on there way home in about an hour. My dad and Jason went down to get Kylee and Grandma. I stayed home to try and get some work hours in however I have to the two boys so I am going to have to wait until nap time (well nap time for Keegan...Collin is a school boy and naps are rare).
She is coming home with the GJ tube and will need to be fed 24 hours a day. No word on when we can change that but hopefully it will only take a few months to change her to 20 hours a day. I'm excited to once again be all together and hopefully this time it is for a much longer time. I don't want to see another hospital room or cafeteria food for a very long time. I am very nervous about the GJ tube but I am sure I will get use to it just like I did with the NJ tube and the G tube. It is just new and takes time.

GJ Tube Placed

Kylee had her GJ tube placed today at 4:00. They weren't planning on placing it until tomorrow or Thursday but for whatever reason they got her in today. So the nurse called and said she is doing great and they are going to talk to the Dr about how to start her feeds. My mom is with her right now and she said it doesn't look any different then the g tube she had. They were unsure if they were going to be able to leave it like the mickey G-tube (just a little button on the outside of her belly) or if they were going to have to have it look like her "peg g-tube" she had before the mickey (a little tube that stick out of her belly a few inches). The cut off is 20 pounds and she is around that mark. So we are very happy they were able to leave it looking like the mickey.
She hasn't had any #2 diapers today and has only thrown up once and it was more bile and phylum then anything.
They also started her on something called Reglan (I may have spelled it wrong) yesterday to help empty the stomach. I went onto my feeding tube support group and say a FDA warning about this medication. My mom talked to the Dr about what I had found and they took her off it right away. I'm so happy I saw that. The side affects are involuntary muscle movement and they don't usually stop after the medicine is stopped. We don't need anything else.
So if things keep going well then she will be home in a few days.

NJ Tube

Yesterday Kylee could not keep anything down. If it wasn't coming out one end it was coming out the other. They ended up having to stop feeding her and put her back on the IV. They decided today to take her down and place a NJ tube (a tube that goes down her nose into her intestine and skips the stomach into the jejunum). They had been thinking about placing a GJ tube because she already has a G tube but by doing the NJ first it is like doing a test run to see if it will work before going to the GJ tube. The difference with the GJ vs the G is that she can not get a feeding every couple of hours. She has to get one straight feed. They say they usually run between 16 and 20 hours a day. I have been trying to stay away from the GJ tube so I am happy they are going to try it out with the NJ first. I would be so upset if they would do the GJ and it didn't work. They are also going to weigh her today. I think she probably has lost a good couple of pounds (I'm totally guessing here...she is nothing but skin and bones) so it is very important to get some calories into her. With all this being said we will not be going home anytime soon.
Thank you once again to everyone for you support. Please continue to keep Kylee in your prayers.

Test are back

We got some of Kylee's test back and she has an over growth of bad bacteria in her stomach from having a low white blood cell count and then having her on so many different antibiotics. The antibiotics kill off both good and bad bacteria and sometimes the bad bacteria can come back faster then the good. When we got her home I had increased her probiotics because she was on so many antibiotics so they are thinking that is why her signs of it were not as bad as most people. When they took the test they said I really don't think she has this but leave it to Kylee to surprise them.
I also talked to them about doing some testing for the dysautonomia and they said the would discuss it and that it is usually done outpatient. I have no idea how they go about testing for it but I want to know for sure. She has so many signs of it that I just need to know. There is no way to treat it but if I know she has it then it will answer alot of my questions about why she has certain problems/issues.
As of now no word on when she will be coming home. I'm not assuming anytime before Monday but I could be wrong. They started her back up on g-tube feedings lastnight and she threw up so I don't think (at least I hope) they would send her home if she is throwing up at all.

Here we go again

Back in Hospital

Well Kylee was admitted back to the hospital on Monday. Ever since we brought her home we have had issues with throwing up, diarrhea, hands and feet turning blue and cold and periods of times were we couldn't even tell if she was breathing. We put her to bed on Sunday at about 9:00 and she woke up at 8:30 for about a 1/2 hour and then went to sleep and was still sleeping at 2:00 pm. She didn't have a wet diaper all day and her feet were blue up to her ankles. I had called our pediatrician who said she thought she had the flu and to just give her clear liquids for 24 hours. Well I had contacted her the week before saying she was throwing and she told me the same thing. I had already tried all of that before I called on Monday so I decided to take her to the ER in Neenah. When they did the blood work they said she was dehydrated and gave her an IV and some glucose because her sugar was low. Well with-in minutes she perked up. They were worried the heart medication wasn't working so they decided to send her back to Children's in Milwaukee. Once we got there they said her heart looked the same and they think the medicine is working. They said she was dehydrated and they are thinking she may have dysautonomia (http://www.familialdysautonomia.org/) . I don't know much about it other then it affects the central nervous system. They are very concerned at the fact that she was so dehydrated but yet her heart rate and blood pressure were normal. They said she could get in big trouble that way because a dr could look at her and say all her stats look fine and send us home when in fact she was in much greater danger then what it appears so Children's is setting up an emergency protocol for us. I don't know exactly what it is all about but I am assuming it will be a quick response flow so we know who to call and what to do so that she can get taken care of ASAP so she doesn't get in a bad situation. This is about all I know right now. We are waiting for GI to come up to see her this morning. I will try to update again as much as possible.