Happy Trach Awareness Week!

I know most of you who read my blog also have me on Facebook, but I know there are a few of you who don't! So I will probably be posting some of the same stuff on here as I will be on Facebook.

This is the first ever Global Tracheostomy Tube Awareness Week! Our journey with a trach has been a crazy one. In my head I think that it has been so long, but really it has only been a little over 2 years. In the perspective of her life span, that's really not that long! My hope is that she won't remember the things she has gone through, but I want her to know that having a trach is nothing to be ashamed of. Really, having a trach is part of what has made her Fiona! It's not always easy, but it has become normal.

I will be making a few other posts with pictures and such so stay tuned :)

Here is the link for the video I made of Fiona if you would like to watch it!

http://www.youtube.com/watch?v=S50N3ZZV0N8&feature=share

Round 3 *ding ding*

So you all know that Fiona had a sleep study on March 8th. We had to wait until April 17th at airway clinic to find out the results. And they were definitely NOT what we wanted to hear. They wanted to repeat the sleep study. Seriously, what? A THIRD sleep study? The results of the second one showed an apnea index of 17. Which means she had 17 apneas AN HOUR. She had mixed, which means both central and obstructive. I think I have explained the difference before, but in case you missed it: central sleep apnea is when your brain periodically stops sending signals to tell your body to breathe. Obstructive sleep apnea is when there is something causing your airway to close or be partially blocked (most adults have this kind). There is a question as to why Fiona would have either type of apnea. A lot of preemies have central apnea, but most have grown out of it by this age. And it's pretty uncommon for a kid with a trach to have obstructive apnea since the trach is actually holding the airway open.

Hearing that she was going to have to have a 3rd sleep study was a far cry from the words that we were hoping to hear. So a few days later they called to schedule the sleep study and said the 1st available appointment was July 5th. Are you kidding me? So they put her on "high priority" on the waiting list. It got moved to May 21st which is a bit better. Then he calls me Thursday night (April 26) and asks if we could come the next night (Friday, 27) so of course I said we would be there. I don't think I was fully prepared, but I knew the sooner the better.

So here is a night in the life of a child getting a sleep study:

5:30 pm- Arrive at hospital and get admitted.

6:00pm- Get to her room and watch her sad face as she realizes where she is.

6:15-7 pm- Answer lots of questions, tell history and meds, see 5 different doctors and nurses.

7-8:30 pm- Try to keep a 2 1/2 year old entertained, go eat dinner in the cafeteria and visit with NICU nurses :)

8:30-9:30 pm- Hold Fiona down while all the probes, leads, and sensors are being put on her.

9:30-10 pm- Try to distract a tired, crying child while tech is finishing setting up.

10-10:45 pm- Rock Fiona to sleep.

10:45 pm- Try to put Fiona in crib, but accidentally put her head on top of all wires, Fiona wakes up.

10:46-11 pm- Rock Fiona back to sleep and successfully put her in crib.

11:15 pm- Tech comes in a tells me to put cap on Fiona's trach.

11:20 pm- Tech comes in to fix a wire.

11:25 pm- Tech comes in to fix a probe.

11:30 pm- Tech comes in to fix a sensor.

11:45- Tech comes in to do who knows what, Fiona wakes up.

11:45- 12 am- Give Fiona bottle and pat her back to sleep.

12:30 am- Fiona wakes up coughing, coughs so hard she throws up, falls back to sleep.

12:45 am- Fiona wakes up, give her bottle and pat her back to sleep.

1:15 am- Fiona wakes up, give her bottle and pat her back to sleep.

2:00 am- Fiona wakes up, give her bottle and pat her back to sleep.

2:30 am- Fiona wakes up coughing, coughs so hard she throws up, Tom suctions her.

2:31 am- Tech comes in and yells at Tom for taking the cap off and suctioning her.

2:32 am- Clean Fiona up and change blankets.

2:35-2:50 am- Rock Fiona back to sleep, have to lay her on wires because she is SO tangled.

3-5:30 am- Is a bit of a blur...

5:30 am- Tech comes in to start taking off all wires/probes/sensors, hold Fiona down for this.

6:30 am- Leave hospital and drive the 2 1/2 hours home (well, poor Tom drives while we sleep).

We have an appointment scheduled for Airway Clinic for May 15 so we will find out the results then. From the bits and pieces that the tech told me, the last one was not a mistake (they were thinking it was a possible machine error). If this is the case, then comes the task of figuring out why she has so much apnea and what needs to be done about it.

Genetic Testing

So, I started this post a couple weeks ago, but never finished it. So here is the part that I wrote before...

Alot of you saw on Facebook that I posted that Fiona's oligoarray (a test that looks for specific duplications or deletions on each chromosome) came back normal! This is great news, but it doesn't just stop there. On one hand we are very happy that it came back normal, but on the other hand it just means that we have to keep looking for answers.

Most of my posts keep things to the fact- what is going on with Fiona and how she is doing. Rarely do I post about how I feel. But all of this genetics stuff is very frustrating. I can't tell you how many hours I have spent researching things and looking for answers. My head is constantly spinning and I feel like most people just don't understand. Most people have no idea what it's like to just KNOW in your heart that something is going on, but no one can seem to figure it out. I am not one to just pour my feelings out there, so people see what I want them to see. No one sees the things that we struggle with on a daily basis. No one sees what goes on in my head. I'm not saying that things are horrible, because they're not. She is AMAZING and I love her to death. She is smart and beautiful and I would not change her a bit. But things are complicated. It is very frustrating when no one can give you an answer or a solution so you just have to figure things out on your own.

I'm not saying all this because I want you to feel sorry for us or because I want your pity. I say these things for a chance for you to understand...

And now on to the test results:

Last Thursday (March 8th) Fiona had a bone survey (which is basically an x-ray of every bone in her body) and a bone age test done. I just talked to the genetic counselor last night and she gave us the results.

The bone survery didn't really show anything that gave them any sort of clues. The only thing they really noticed was that there is a slight increase in the distance between the discs in her spine. But apparently this is not really an issue.

Her bone age test on the other hand showed that her bone age is very delayed. She is 27 months old and her bone age is 15 months. This basically means that her body thinks that she is 15 months old, which is why she is so small and growing so slowly. Ok, so now we sort of have an answer as to why she is so small. The bad news is that a delayed bone age isn't really an answer or a diagnosis in itself. There has to be a reason that she has such a delayed bone age.

One "good" thing about this is that maybe now I don't have to worry so much about how much she is eating and how many calories she is getting. I mean, I still have to make sure she is gaining weight, but I know that she is always going to be small no matter what she eats or how many calories she gets. (I am going to call her nutritionist today just to be sure about all of this)

So what's next? We will start DNA testing for a group of disorders that her geneticist thinks she might have. We will also be seeing endocrinology (hopefully soon) because they deal more with the growth part of things.

There is never a dull moment around here :)

A Week From Hell...

If I never saw anymore puke or poop for the rest of my life, I would definitely be ok with that.

 

 

Sunday night (the 5th) Fiona started throwing up. As you know, throwing up happens alot here. But this throwing up was different. Usually she throws up mostly when she coughs or gags on something. This time she was just throwing up out of no where. I finally got her to go to sleep around 11 pm. She woke up at midnight and threw up all over herself and we had to change her trach. I got her back to sleep only for her to wake up again at 2:30, once again puking, and we had to change her trach ties. The rest of the night is a blur. I have no idea if I even slept at all or how many more times she threw up.

 

 

Of course Tom had to go to work for a couple hours on Monday. But the throwing up continued. By this time I was getting worried because she wasn't keeping ANYTHING down, not even Pedialyte. So when Tom got home we took her to the ER. She was just about at the point of dehydration. They started an IV (which is a whole other story- our local ER is awful at getting an IV in her. I had to hold her on my lap in a bear hug while Tom held her legs down. They tried once in her hand and I told the nurse she had to stop because she was poking around), did lots of blood work, a chest x-ray, and a belly x-ray. They started fluids and were thinking about doing a cat-scan of her belly. Apparently the radiologist saw something that he wanted a closer look at. Luckily they decided not to do it because they were going to have to sedate her for it. We had an AWESOME doctor (which doesn't happen much there) and he was trying to get her admitted to our hospital just for observation overnight. But they won't even think about it because of her vent. So then he was debating whether to send us home or to Pittsburgh. Luckily he just sent us home. So after 6 hours in the ER and some fluids she seemed much better and we assumed that we were just dealing with a stomach bug.

 

 

We got home around 8 pm. Very shortly after that the diarrhea started. The first couple times we thought it was either just the bug or from the fluids. By this point ALL she wanted to do was drink. Which is unusual for her because she really doesn't drink that much during the day. We gave her a bath because her little bum was getting so sore from pooping so much. She even took her cup in the bathtub with her. She would not let that thing out of her sight. But as fast as she was drinking, she was just pooping it back out. I was changing her diaper about every 10-15 minutes.

 

 

I got her to fall asleep around midnight, but she woke up at 1 am screaming because she wanted a drink. She then started to throw up again. But if you took the cup away from her she would scream like I have never heard her scream before. I had never seen her like that. Her face was pale, her eyes were dark, and the rest of her body was blotchy. Her hands and feet were cold, she was screaming, and her whole body was shaking. We took her to the ER again around 2 am. We actually packed our stuff for Pittsburgh because we thought for sure that they would be sending us this time. But he didn't really do anything. Just told us to only give her little amounts to drink because she was drinking too fast and her stomach was too full and that's why she was throwing it back up. We were back home by about 4:30 and then it was time to try to get some sleep (yeah right!). This part is kind of a blur too. I have no idea if I slept or how many poopy diapers I changed. She was actually pooping in her sleep and didn't even know it.

 

 

Around 11 am I got a call from our ER that they were rechecking her x-rays and they thought that her liver might be enlarged. I called her surgeon and they called me back and said he wasn't so concerned about her liver, but he wanted to make sure she didn't have an obstruction somewhere in her intestines. So we packed up all the rest of the stuff we needed and headed to Pittsburgh.

 

 

We got to Pittsburgh around 4:30. They started her on IV fluids, did more blood work, cathed her for a urine test, tested her poop, and did more x-rays. She was still pooping SO much and her poor little butt was so red that it started bleeding a little while we were there. We finally got into a room in the PICU around 8 pm. She has to go straight to the PICU, even if she isn't that sick, because of the vent at night. She is already so terrified by doctors and nurses and to make things worse she was in isolation because of them thinking she had c. diff. This meant that everyone that came in her room had to put a gown, mask, and gloves on. What 2 year old wouldn't be afraid of that? The poor thing was so exhausted, but I swear every time I got her to fall alseep someone would come in a wake her up. They have to do vitals every 2 hours in the PICU and that doesn't include the respiratory therapist or doctors checking on her. No one really got any sleep that night.

And then they ordered blood work for 6 am. And guess what? Her IV wouldn't draw back so they had to poke her again to get the blood.

I can't even put into words what it's like to hold down your baby girl while she is screaming "Mama up, mama help, MAMA PLEASE" while you are saying "It's ok, it's ok" knowing damn well that it's not ok and you want to cry right along with her. (And then multiply that by about 20 times just this hospital stay)

And of course as soon as I got her back to sleep her nurse came in to do vitals and woke her back up. I know that they need to do vitals, but how is a kid supposed to get any better if they won't let them sleep? The rest of the day was pretty awful. It is pretty hard to keep a 2 year old entertained in a hospital bed. She couldn't even stand up because her IV was in her foot. She was pretty mad about that. And to top it off, Tom was sick. Tom hardly ever gets sick, but he couldn't even move off the couch. So if it wasn't already hard enough, it was like I was there by myself, BUT I also had to take care of him. At some point during the day we found out for sure that she did have c. diff-

Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.

In recent years, C. difficile infections have become more frequent, more severe and more difficult to treat. Each year, tens of thousands of people in the United States get sick from C. difficile, including some otherwise healthy people who aren't hospitalized or taking antibiotics.

We had to start giving her a medicine called Flagyl. We already have a hard time giving her meds because of her eating/gagging/throwing up issues. She was not happy and fought us as hard as she could, threw up, and fought us some more.

(This was one of the happier times during the day!)

She did really good during the night so they stopped her fluids in the morning and then decided that she could come home on Friday afternoon. For some reason this was one of the worst hospital stays we have had. She was miserable and Tom and I weren't much better. I think alot of it had to do with not getting any sleep. Tom and I had to sleep in her room both nights switching between the couch that turns into a "bed" and the "recliner".

She is still pooping like crazy. And our biggest problem has been getting her to take her medicine. I actually tasted it to see why she was gagging and it is seriously the worst thing I have ever tasted in my life! Even I gagged on it! And we have to give it to her 3 times a day. We had a couple tricks that worked at the beginning like putting it in pop or giving her ice cream to get her to open her mouth and in between squirts, but those only lasted so long because she is one smart girl! I posted a couple different places online looking for suggestions or tips, but nothing seems to work. Our "trick" that has been working since last night is to use the tiny little syringes and almost stick it down her throat. That way none of the medicine touches her tongue. It still sucks, but she hasn't thrown it back up that way.

She seems to be doing much better, despite the pooping. She is back to playing and being her crazy little self! It's so good to see her smiling again!

So there you have it- a week in the life of a medically complex kid with c. diff!

Pictures of O Awareness Day!

This was Fiona's first outfit, but I didn't get a picture BEFORE she threw up on herself haha!

And Fiona and I in our black and white :)

I was overwhelmed by the amout of people who participated in Omphalocele Awareness Day! Thank you to everyone! Hopefully we can find a way to make it an official day and it can start growing. I plan to have a lot more stuff made up for next year :)

We really do need to spread the awareness because people just aren't getting the right information. Doctors (and sometimes families) are still sometimes pushing for termination of the pregnancy- I actually just read a post about this the other day. They give the families no hope. People need to know about the increasing number of success stories out there!

Even though our awareness day is over, please keep helping! Share our blog :)

Happy Omphalocele Awareness Day!

I hope you are all wearing your black and white today!

Check out the new "tabs" I have a the top in honor of today!

Hopefully at some point today I will be adding another tab with O pictures from birth until now, so check back later!

My how time flies!

In preperation for the upcoming 1st ever Omphalocele Awareness Day on Tuesday January 31st, I am hoping to get my blog updated! I would say that I am really hoping to be able to blog more like I always say, but we all know how that ends up :)I am also making some awesome changes (thanks to a friend for giving me directions!). I am in the process of making "tabs" at the top of my page with info, Fiona's story, and some pictures!

I am hoping to have lots of views to help spread awareness in the next week or so!