C-Diff

Just a little update: Alyvia is still fighting C-Diff, so she's been really fussy, but she hasn't had any more fevers (so hopefully this means no more febrile seizures!!)

Livie has had such a hard time kicking this crappy (haha, no pun intended!) C-Diff. Any advice for fighting it??

She is still getting the steroid through her breathing treatments, it must be working because her lungs and breathing have been a lot better. (:

We're just waiting for it to warm up around here so we can go outside and play!!


Yesterday the sun was finally out!!
Kassidee and Logan (check out Logan's eye, he got into a fight with a cow.)



Learning some trampoline tricks from Shayla

Livie and Grandma

Sorry, I have to vent....

I ususally try to keep this blog upbeat and positive....however, this post is going to be a bit of a venting session....
It all started yesterday....Livie had a fever all day, I couldn't get it to break. She had really bad stomach cramps and diarrhea, most likely her C-Diff was back. Yuck. She also stopped breathing 3 times already. She just kept crying and crying and her fever kept getting higher and higher. She finally fell asleep for a nap. She was asleep for a little while when I heard these strange noises coming from the bedroom. I went in to check on her.... Her eyes were open, but deviated to the left, her pupils were dialted. She was making weird gurgling noises and could not speak or move.
I kept telling her to look at me, to talk to me. She couldn't. (I am fighting panic at this point.)
I picked her up and held her. She still couldn't talk or move. Her eyes were still stuck and not tracking. I am starting to freak out now.
Thank goodness my phone was close by, I called the pediatrician, they said to get her to an emergency room immediately. Everyone was gone, but I was able to get ahold of my mom (who had just gotten off work.) She rushed over to my house to take us to the nearest hospital: Bingham Memorial hospital. Blackfoot's only hospital. (Definitely not my first choice, but Alyvia is still non responsive, and her coloring is starting to get worse, and I am getting really scared. I can't help but wonder if my little girl just had a stroke.)
Now for those who do not live here, I will tell you, BMH is not a favorite hospital to very many people. In fact, it's the town joke that if you are dying, not to go there because they will kill you off. (Harsh, but pretty true.) I was hesitant taking Livie there, but obviously this was an emergency and she needed help....
We get to the emergency room and Alyvia's eyes or no longer deviated to the left, they are looking straight ahead, but she is still not tracking and she is trying to talk, but the words just are not coming out right.
A man, dressed in regular clothing, takes our info and takes us back to the ER. (I guess he is the nurse) He then tries to weigh Alyvia in a baby scale. I am trying to give him a run down of Livie's medical history since it is quite extensive. Meanwhile, this nurse is having a hard time getting the weight. I tell him that we see the doctor on a regular basis. I know how much Alyvia weighs, does she really have to be weighed right that second? (I am a bit more concerned about whether or not she's had a stroke than how much she weighs.)
Mr. nurse than goes to get a thermometer to check Livie's temp. Oh, and it can only be a rectal temp. They can NOT do it any other way. (Seriously? That is the ONLY way. Does he not understand that she has got explosive C-Diff diarrhea and he should not be wanting to put anything down there!!) I ask him if he has to do it rectally....he HAS to. There is just no other way, and he cannot take my word for it that she's had a fever. He needs to know for himself. (Seriously? Are you kidding me? He can't listen to me, her mother, or feel the poor girl's forehead to see how hot she is?) More importantly, this nurse had not even looked at Livie to assess her. He hasn't tried to talk to her, look at her eyes to see if they're deviated or dilated, checked her breathing....NOTHING!
I am starting to get really concerned at this point, I don't know if Alyvia's had a stroke, if she's okay, and all this nurse wants to do is put a thermometer in her bum.

Whatever, I lay her down so Mr. amazing nurse can get Livie's temp. My mom warns him that Alyvia has a history of stopping breathing, turning blue and passing out. In the past she has needed oxygen to recover. (I am worried because her oxygen is only 80, shouldn't she be getting some oxygen anyways right now?)
Here is the real kicker: The nurse does not get any oxygen for Alyvia, INSTEAD he asked me why we are there.
WHAT!! HELLO! Why do you think I am there?! Then this great nurse proceeds to tell us that if Alyvia stops breathing it will actually be a "good thing." She can "reset her system" and it will actually "help her."
(Apparently he is not understanding all the brain trauma and medical issues Livie has had.)
Well, I picked my jaw up off the ground and told the nurse that I obviously came here to get help for my little girl, and if he could not offer that help, then we could go somewhere else.
And that is exactly what we did.
We left.
My mom is laughing at this absurdness of this whole thing, she could not believe how ridiculous the nurse was. (For a moment she thought we were on "Punk'd" and that Ashton Kutcher would come running out.) It was that messed up!

I am in tears, but at least Alyvia is trying to talk more and tracking with her eyes.
I call Livie's pediatrician and told him what happened. He says that Livie needs to be seen and that he would see her (even though it was after hours.)

Have I mentioned how much we love Alyvia's pediatrician. It's a drive to Pocatello, but it's worth it, he does so well with Alyvia and I trust his opinion.
By the time we got to Pocatello, Alyvia was acting a lot better (finally talking and tracking with her eyes, and sitting up.)
Verdict: Livie did not have a stroke (Phew!) The Pediatrician thinks that Alyvia has the stomach flu, and that because of the high temps she had a seizure while she was sleeping and had a hard time coming out of it. Because her oxygen was doing so well (a record setting 95) she didn't need to be hospitalized. However, if this happens again, Livie will most likely be put in the hospital to be monitored.
I have seen a lot, and as bad as it sounds, I am used to seeing Livie turn blue, stop breathing, even seizing. This episode just really scared me. It brought back all those memories of being in the hospital when Livie was like this and there was nothing we could do.

Because of all the brain trauma, Livie's brain isn't firing exactly right, but I am so thankful it's working as well as it is. I love this little girl more than life itself. (Even when she scares the crap out of me! ;)

I still cannot understand why we got such horrible service from the nurse at BMH. Especially since Alyvia has got such a crazy medical history. It's pretty sad that this nurse would act the way he did.
I do know that I will NEVER be going to BMH again.

I'm back!

Ashley and me


I'm back!! I went on a week long cruise with my sister. We had a great time, it was so nice to be in WARM weather! It was a really fun (and probably needed ;) vacation. I was really worried about leaving Alyvia (I have never left her and with everything that's happened I was worried how she'd do) She was in good hands, though, and she did great!
Now that I am home though, Livie is sick again! Bleh! She has C-Diff yet again (it is a constant battle with that C-Diff!) And she's had an ongoing fever, hopefully this is just from the C-Diff. So she's not feeling too hot, but her lungs sound great! She isn't wheezing and her oxygen is good.
I decided that I am just going to have to keep Livie indoors until it warms up around here (which could be a while!) She just seems to pick up every germ, I don't think her immune system is quite ready to be out and about yet.

Before I left, we had a nice, sunny day (pretty rare, I know!) So we took advantage of it and Livie played on her trampoline. She absolutely loved it! I couldn't get her to come back in the house, we even had to eat lunch on the tramp. She was a little hesitant at first (she hadn't been on the tramp since before the brain surgery...) but she remembered all her old "tricks" and showed them off for me! It was fun, Alyvia LOVED being outside in the nice weather.

Now if it'll just warm up and be summer already...!

Woah...catching some air!!

Good!!

Livie is doing a lot better! (: She's finally gotten rid of the fever and runny nose. She is breathing so much better now. (She wheezes just a little bit, but that's pretty good for Alyvia.) The steroid has worked really well, even her cough has gotten much better. Yay!

The Infant Toddler Program and Early Intervention have been working with Livie. (They come into the home and work with her, they provide therapy and preschool if she needs it. They evaluate her monthly to see where she is at mentally and physically.) She just had her last evaluation, she did really well. Especially compared to when we first got home. When we first got home from the hospital, Alyvia was not at all where she needed to be. She couldn't even walk, she couldn't see (her vision was just starting to come back) She didn't talk much, she just cried, a lot. It was really frustrating to finally be home, and realize that Livie didn't really know what home was.

More than anything, though, it was really hard knowing I had a normal, regular child and now I had a child who had suffered so much brain trauma and so many other complications that her brain was not working right, she was so out of it, and completely not herself. Everyonce in awhile I would get a glimpse of my Livie and I knew she was in there. She needed more time. Her brain needed more time to heal.

When we left the hospital, Livie's CT scans showed that Livie had suffered so much brain trauma that she had brain atrophy. It was really hard hearing that my little girl had brain trauma and damage to her brain. No one knew the extent of the damage, or what Livie would or would not be able to overcome.

After a while of being home though, it was like something finally healed in Livie's brain and she "woke up." She was my Livie Bug, she was back! She had the same personality, some things were a little different, but she was back and started making progress in leaps and bounds.

Like I said, Alyvia just had her last evaluation. She is where she needs to be for her age. She did not show signs of delay. It seems Livie's brain is working just fine. The coordinator gave me Livie's very first evaluation results along with this last one so I could compare....
I sat there and cried and cried. Livie has come such a long way. To know that she had sooo much brain truama, to now being a normal little two yr. old. To see where she came from and then to see where she is now.... Alyvia really is our miracle. I do not know what the future holds for us, but I am very thankful Livie is here and doing as well as she is.

Then: In the PICU when Alyvia was so sick. (She was still only 17 lbs, but she was SO swollen with crepitus - air in her tissues)

>Now: I think the picture speaks for itself

Since it's been so cold out lately, we've been trying to keep ourselves busy in the house....I got some paints out and Livie really loved it! (She even painted the table and chairs -good thing for washable paint!!)




Livie and Rachel (her second mom)

Livie loves Pat!

Update

I think I spoke too soon....Alyvia was doing alright, but then yesterday she got really sick and had a fever all day. She was having a really hard time breathing (I was so worried she was getting pneumonia.) We had to take her back to the pediatrician last night. He was worried about her lungs, so Livie had some chest X-rays to see what her lungs looked like.....
They looked good!! PHEW! I was SO relieved. She doesn't have any fluid in her lungs and the atalectisis (portion of lungs that has closed off) has even gotten better.
Because she is having such a hard time breathing though, she is starting a steroid, the albuterol treatments just weren't cutting it. I am not crazy about a steroid, but it's a low dose and if it helps her breathe than it's worth it.

The pediatrician thinks the most likely cause of the new fever is a viral infection on top of what she already has (RSV.) The doctor doesn't want Livie on antibiotics because of her long history with C-Diff.
Right now our biggest concern is Alyvia's lungs and making sure she is getting enough oxygen. As long as her lungs can hold up she'll be okay, and right now they are. (They just better keep holding up!! ;)

Feeling a little better

Alyvia is doing a little better. She hasn't had a fever and she is no longer gasping for air or panting really hard to breathe, she is still really wheezy and has a cough, but as long as she isn't fighting so hard to breathe, we're okay. (And she doesn't have blue lips, they are nice and pink now!)
We're going to take it easy until Livie feels better. We're also waiting for it to warm up around here, which could be a while considering it SNOWED today!! (Not a lot of snow, but still!)

As you can see in this picture, Alyvia is still sportin' the rain boots. (Yeah, I know Easter is over, but Livie really likes her Easter basket, it has become her new favorite toy!)

Once again it was nap time and Livie HAD to sleep with her boots on, I snuck in later and took them off. (Hopefully this doesn't become a daily ritual.)
SiLLY GiRl and her RaiN bOOts!!

Our friend Carson returned home to his Heavenly Father

Anchorage resident Carson Wallace Henrie, 2, died March 30, 2008, at his home surrounded by family
At 16 months, Carson was diagnosed with a brain tumor and flown to Primary Children's Medical Center. As he fought through the treatments, he touched the lives of all who knew him. Carson displayed amazing courage and had an enormous will to live.His family writes: "Carson taught us what is truly important in life and to appreciate the little things. By example, he taught us about patience, endurance, faith and love. He taught us to smile when life is hard and to fight back even harder. He taught us to have hope, don't give up and to continue believing in miracles. We've learned the preciousness of every second we have with our children. Though we will miss Carson terribly, we will be forever grateful we had the chance to know and love him. Carson has changed our lives and will remain in out hearts forever.


This little boy, like Alyvia, had a brain tumor. Carson's tumor was cancerous and he fought a long, courageous battle.
I will never forget Carson, my heart goes out to his family.

Reality Check

Livie saw the pediatrician today. He said it is very likely she has RSV, her lungs are just so damaged they're having a really hard time working against this virus. Her SAT's were borderline low (87-92) they should be a little higher. Her heart rate was pretty high. (Probably from working so hard to get oxygen to her body.) I am keeping a close eye on her. If her SAT's get any lower or she spikes another fever, than I have to take her back to the doctor. We really want to keep her out of the hospital. Our pediatrician has been so great with Livie and won't hospitalize her unless he has to.

It was just unexpected because Alyvia looks so good and she's done so well since we've been home. She has made soooo much progress, but I had a reality check today,
Livie's lungs are still damaged and weak.

I'm keeping my fingers and toes crossed and praying that she'll beat this little set back like she has the others. (:

Girl Time

Some of us girls went to Utah this last weekend. We went to Park city and we went shopping. It was a big day, but we had fun and I found lots of cute stuff for Livie. She does not fit into ANY of her old clothes....she's doubled her size in the last few months! ;)
This is the first time Livie's been to Utah and not gone to Primary's for appointments. It was quite nice driving right on past the hospital's exit!

Livie and her "Granny Goose"


I wanted to buy some rubber boots for Alyvia to wear around on the farm. We found these and Livie LOVED them! She had the wear them the rest of day.....and night! When it was time for bed she wanted to wear the boots, she cried and cried. Doing what any other sleep deprived mom would do....I let her, she wore them to bed.

She has been wearing them ever since. (Seriously, she has them on right now)
(Yeah, they are on the wrong feet :)

Lungs

Alyvia is sick, she just got a cold, but it has gone to her lungs. She is having a really hard time breathing and catching her breath. She's doing breathing treatments and we have an appt with her pediatrician to make sure her lungs don't have fluid in them.
I am just really paranoid about her getting ARDS (lung disease) again. It happened SO fast. One minute she was recovering from brain surgery, the next she was in the PICU on life support because her lungs were completely full of fluid.

So I am keeping a close eye on her and we'll be laying low for awhile.