out of ICU

Emily got moved to a regular floor yesterday (friday).

This is her "room" in ICU. One wall and a curtain.

We have never had to go there before and I can honestly say I don't ever want to go back. It was not bad for us, it was just heart breaking to see all of the other kids there.

Emily was there because she was given a lot of medicine to stop her seizures, so they needed to monitor her very closely and fortunately she did great!

Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.

To hear the cry of a mother who just lost her baby is a sound I don't think I will ever forget. I have never been so thankful for Emily. I don't have to give specifics but please pray for that young mother.

The nurses and doctors that work there are some very special people and I have a lot of respect for them.

Enough with sad things.....

So, good news is Emily did not have a seizure that we saw yesterday. She has been extremely drugged and now that I think of it I did not see any spasms either, I will have to ask Joe if he did. Actually it's been 27 hours since her last one but hey who's counting? :)

I had a great talk with Emily's neuro dream team :) and we have decided to add a new medicine, lamictal. That drug will slowly be increased to her max dose along with zonegran. Once she is on those we are going to wean her off phenobarb and we have already began to wean klonopin.

So while she has been here she has been getting iv steroids and oral valium, that combination seems to really work when she has a major cluster like she had. In the coarse of two days Emily had over 120 seizures, that we saw, and that is not including her spasms that she has almost every time she wakes up. On top of her g-tube balloon exploding again, it has been a rough couple days for her.

I want to thank everyone who called and left us messages or send us messages on facebook. I am sorry if we were unable to return all of the phone calls but know that we listened to them all. We were not allowed to have our phones turned on in the ICU. I am thankful for the people who support us!!!

So if Emily behaves tonight we just may get to go home in morning. Keep your fingers crossed! If not we will go home on Sunday.

Please keep in mind if you plan on visiting in the hospital or at home please make sure you are healthy. Emily has taken another round of steroids which can lower her immune system and we need to continue to keep her healthy. Seizures are enough for this girl!

One last thing, June 19th is the epilepsy walk and we still have not met our goal of raising $500. Every dollar helps!

Click here -> Epilepsy walk

If you would like to walk with our team just click join team, if not you can donate any amount you like. It looks like we are going to have a pretty good sized team!! I can't wait. I am going to try my best to get shirts made so if you are for sure walking and would like one send me an email or message on FB and let me know sizes.

In the hospital again

Emily's g-tube balloon popped again! Actually it looks more like it exploded! Ugg! Except this time we could not get the g-tube back in so we had to rush to the ER to have them put it back in.

Meanwhile she has been seizing a ton yesterday and the day before. I gave her tons of meds but nothing was stopping them. I was desperately trying NOT to go to the ER and then she pops her balloon and now we had no choice.

While we are in the ER she starts showing off her seizure skills and it really impresses the doctors so she got a free ride to the ICU.

She is really not doing that bad, they are just extra cautious because they have given her so much medicine and they need to monitor her more closely.

Let me tell you it is a WHOLE different world here. I cannot have my phone on. So if you did not get a phone call that is why. I plan on making all of the phone calls in the morning, so don't worry.

Hopefully we will go to the floor in the morning or either be discharged home.

So that is that. I have gotten no sleep, well I lied I got 1 1/2 hours. I don't see much sleep in my future either.

Please keep us in your prayers. I would love to go home and spend a relaxing Memorial weekend there.

they're back

We have had a rough night.

Emily started seizing around 6:45pm and has not stopped. She had 49 seizures yesterday and since midnight she has already had 9. They around 5 to 30 seconds long. I have given her all of the medicine I can give her for now.

Since we switched to oral Valium it really knocks her out, unlike the ativan.

She is not on her full dose of zonegran yet, we just increased it again last night so hopefully that will kick in. Until then we started her on another round of steroids last night but those usually take a few days to work.

I have to take her to the hospital in the morning for some blood work and I pray that she stops seizing before we leave.

Stupid seizures!

burst your bubble

We had to make a trip to the ER last night and it had nothing to do with seizures!

Who ever thought that would be an exciting comment haha!!

I was changing Emily's diaper, getting her ready for OT, laid her down and her g-tube was sticking out much further than normal. I pushed it back in and quickly checked the amount of fluid in the balloon that holds it in place and all I got was formula.

That meant that the balloon in her belly had popped and I was pulling formula from her stomach that I had just fed her. I taped a gauze dressing tightly over the g-tube (which was still in place) and we took her to the ER.

The balloon on the bottom is what is inside of her stomach.

The dr. in the ER took out the old and popped a new one right in. No problems at all. Emily slept in daddy's lap the whole time.

We were told that we are model parents! Yay pat on the back for us. Her stoma site (hole in her belly) was perfect and very clean.

You know its bad when the ER doctor walks in the room and is happy that we are there for just a g-tube issue.

You see some very interesting things in the ER waiting room. Some people use the ER as their pediatrician. One mom brought her 6 or 7 year old in because she "threw up last night" seriously lady! Another brought her 2-3 year old in because he was chewing on glass and she was afraid he may have swallowed some hmmm perhaps.

Having a sick child makes you look at other peoples emergencies and almost laugh. Ha, your kid swallowed glass, well mine can seize for hours on end. Do they make bumper stickers that say that? haha

Sometimes you just have to laugh!

feelings

I have really debated posting this for a very long time but I think I need to get this off of my chest.

Unfortunately I feel like there are some people in my life who don't completely understand what we (Joe and I) are going through.

My daughter has many special needs. She is globally delayed-meaning all over. She has not met many of her milestones.

She cannot hold her own head up, set up, feed herself, or even hold her toys.

Watching her suffer from relentless seizures daily is painful to say the least. I know what those seizures are doing to her forming brain.

On a daily basis I have to crush and mix meds (3 times/day), clean her bottles, g-tube extensions, syringes and med cups. Measure out her formula by the gram on scale.

Check her blood sugar and ketones in her urine twice/day.

I have to keep her g-tube site clean and dry, check the balloon on her g-tube for the right amount of fluid so that is does not come out.

I have to deal with our private insurance company, SSI, medicare, first steps and now a visual school on a daily or weekly basis.

I have to make doctor appointment and schedule therapy. I have to do said therapy with her daily. Make sure I change her position often because she can't.

On top of all of that she needs things every other baby needs, baths, diaper changed, play time, rocking, cuddling.

Now I am trying to plan her 1st birthday party (and have gotten no where) We just did her one year pictures.

I don't sleep much and when I do I wake up often worrying about her or what needs to be done.

My blood pressure has been high and the meds are not helping again (calling the dr in the morning) I have no time to cook healthy meals for me and Joe-thank goodness for church family!!

Joe and I have not been on a date or even alone in the same room in months (like over 6months) and if we did have alone time I am sure we would both just want to sleep.

Joe works a 40+ hours/ week and takes care of a lot of the things around the house because I just don't have time to do much else. He also runs off of minimal sleep daily. I can't tell you the last time I made my bed or cleaned my bathroom.

I did not say all of this because I want pity or everyone to say what a great mom I am. I have actually turned off the comments for this post alone because of that.

What I am trying to say is, I barely have enough time to shower let alone make phone calls. I miss my family and friends and feel very isolated. I need people to call and check on us, even if it is only listening to a voicemail because I could not answer the phone. If I am busy I simply won't answer the call. I turn my phone down if I am sleeping and it does not wake Emily up if she is sleeping.

Please right now don't expect too much from me. I don't have much to give and what I do have is all being given to Emily.

I am so thankful for the people I have in my life and I don't want this to sound like I am an ungrateful person. Joe and I are so grateful for the many blesssing we have recieved during all of this. These are my feeling, right or wrong. I pray that no one is offended by my words we just hate feeling isolated.

Still not bad

Emily had a few more seizures today. They are still very short most under 10 seconds. We switched her rescue medicine from Ativan to Diazepam (Valium) and it worked really well. The ativan seemed to make things worse. I am very relieved that we have something that will work. Normally when Emily starts to have a cluster of seizures it can last hours and she can have 20-40 in one cluster, today it lasted under an hour and she only had 9. It's still an improvement.

I had to share this picture. When Emily sleeps she will sometimes reach out for me and she will hold onto me or sometimes she holds my mother necklace that Joe got me for mother's day. I just love this!

My goodness I love this little girl!

small victory

Emily got her one year pictures/ family pictures done yesterday.

It was a beautiful day for pictures! We took them outside at a local winery/farm. It was through the littlest hero's project. I talked about this in a previous post . Shanna Simpson, the photographer was so great! She was super nice and it was a pleasure getting our pictures taken by her! I can't wait to see them. Emily looked so cute in her tutu our friend Chandra made for Emily's 1st birthday. She is very creative, Chandra is also the one who made Emily's "hospital" blanket. We took this blanket with us the very first time she was ever in the hospital and from then on anytime we have to go somewhere we take it because it is such a comfort to her. We get so many compliments too!

Emily would not smile for her pictures though. We tried and tried and made complete fools of ourselves but I am sure we still got some great pictures!! Thank you Shanna for being a part of the Littlest Hero's project!

Ok onto the small victory...............

I have always been very hesitant about "bragging" when she has fewer seizures, most times Joe and I call her seizures the monster as to not let her seizures hear us and come back with force. I have realized though we may not always have good days or even great days so I NEED to celebrate all of her victories, large and small.

Two days ago Emily had 4 seizures, the day before yesterday 3, and yesterday she had 1. Now that is not including her spasms that she still has almost every time she wakes up, but even those are getting weaker and weaker. I also realize that Emily has many more seizures than we actually see but still this is a huge improvement from 70+ seizures/day.

I do not know if Emily is just having a good day or if we are actually seeing an improvement in her seizure control. I would love to say the later but only time will tell. Thank you all so much for your prayers!!

Also, I would love to get shirts made for the Epilepsy walk for our team. If anyone knows of a cheap place please send me let me know. Thank you all for all of the support we have already gotten for the walk. Emily just may raise the most money!!!