6 Days Shy of 4 Months

The past 2 weeks have been pretty rough. She has been sleeping 23 ½ hours a day & having bursts of seizures throughout the day, 1 every 5-10 min. I called her pediatrician on Thursday & said we have got to do something. What good is it doing having her all drugged up & I’m still seeing seizures? So, he called down to Seattle on Friday & they recommended another drug. When he called me back on Friday, she had been awake for most of the afternoon!

I went & got the prescription filled anyways. The past 4 days she has done a complete turn around!! Awake all day & I’m only seeing 2-3 seizures A DAY! So I called her pediatrician on Monday & told him the great news. Also mentioned that I DIDN’T start the other medication since she started to come around. He was happy with my decision. I also suggested that we should go get a blood level check to see where we stand with her medications so we know where we need to target her in the future. He said “great idea”.

So I went Monday night & got that done. We are still pending her Topomax level (takes about a week). Her Phenobarbital level was 96.7 (targeting 90-100).

I am just so happy she has turned around again! It’s all about juggling medications. She has been so alert, focusing, & talking up a storm!

Other good news!! She started to hold her head up on her own & move it around!! YOU GO GIRL!!

Anyways, I’m rambling, but just very excited that things are looking up again.

We should also be moving into your new house this weekend!! HOW EXCITING!!

Take Care Everyone!!

3 Months 13 Days

Brianna is still at home & doing fairly well. Since we have been home, we have had 1 pediatrician visit, 2 visits to the surgeon that did her feeding tube surgery, & 2 visits to the lab for blood work to make sure her Phenobarbital level is where we want it to be.

She has had a pretty rough week this week. Her seizures started escalating last Tues. I didn't worry about it too much because we were going to have a level check done on Wed. Sure enough her level had dropped. So we increased the meds. By Sunday night, her seizures had increase even more...having 1 every 5-10 min. After an hour & a half of this, I called the 24-hour line to my ped's office. Talked with another one of the doctors, & we decided to increase the meds again. I also had to turn up her oxygen from a 1/4 liter to a 1/2 a liter.

The next 4 days, she slept most of the time, was maybe up 2 hours total the last 2 days. Last night she finally had some awake time (of course now her days & nights are mixed up). Because of her sleeping so much she really hasn't handled her secretions well at all...so last night I got out the stethoscope & listened to her lungs (yup learned how to do that too!)

She does have some fluid in her lungs. Poor thing. So I have been doing CPT (chest therapy) with her to help open up her lungs. She coughed out a lot of thick yucky stuff last night...so I'm hoping that what I'm doing is working. Going to wait it out through the weekend & see how she does. She is already doing better today than yesterday.

We have started seeing the Infant Developmental people as of this week. We will be meeting every Monday to work on her developmental skills including feeding (my #1 priority).

As I said, this week was hard, but we managed to get by without taking her back to the hospital. I thought I was really going to break down (did a little)...the fear of taking her back was just too much for me.

In other news...

The house that we are building is almost done! The foreman said within a week & a half. HOW EXCITING! Our first home!

Also...I did a PartyLite fundraiser (with the help of a friend) while we were in Seattle. Sent out packets to 80+ hostesses of mine requesting their help in keeping my business going & also giving them the opportunity to see the new line. Total profit on that was $1200!! Which I thought was great considering only 4 people participated.

Anyways, I will try to post messages more frequently. But always keep in mind...if you don't hear from me...then things must be doing good, because I don't have time to post a message!!

12 Weeks 1 Day - Going Home to Alaska

Well everyone....we made it home! We took a commercial flight out of Seattle last night & arrived at 10 pm Easter Sunday. My wish was to be home for Easter...well I didn't get to celebrate the holiday at home...but I was for sure home before the day was over!

Brianna did a complete turn around the middle of last week & is doing great. She is still having some seizures but they are much more controlled now then they were when we left for Seattle.

There were a few road blocks on our way home that I would like to share with you...make you laugh a bit!

We were in first class & so far I was able to handle things on my own. We are in the air & it's time to feed her & give her medications. Well...some of the medications are tablet form & must be crushed & another is liquid. Since she is still fed through a tube in her stomach this can be a little tedious. I thought putting them down together & not letting them dissolve a bit first would be ok. Luck would have it...they got stuck in the tube. I tried to plunge them down, but Brianna reacted & out came the meds...all over her. The flight attendant kept asking me prior to this if I was ok & if I needed any help...well...now I did FOR SURE! We had to ask the gentleman beside me to get out of his seat & stand while the attendant helped me. Here he is...in first class for a relaxing ride...NOT! I felt so bad...but he was ok with it & knew that she was more important then his comfort. So we got all of that under control & went on our marry way.

The reunion with Dad was great...since Brianna still requires oxygen, he was able to come onto the plane when we landed to switch out the tanks...the smile on his face was priceless, it was a great moment.

On to the next story!

So I'm in baggage waiting for Kevin to come with the truck...and all of a sudden her oxygen tank fell over & the piece that the tube fits on breaks! OMG Now what?!?! That was a stressful moment. We were able to get the tube to fit over the nut as long as I held it tight. So that's what I did all the way home. Talk about STRESS!

Next story ~

Coming home was stressful too. She needed to be fed again, we were all tired, she needed to be suctioned (hadn't cleared her secretions in 9 hours so she was desating quite a bit), and I hadn't pumped in 9 hours! Of course most of this I had to take care of because Kevin didn't know where I had packed everything. More STRESS! Calm Jamie, Breathe!!!

Next Story ~

We finally are getting to bed, Kevin has to get up in 2 hours, so he is quite tired (as am I). I get Brianna in her bassinette & start her feed....luck would have it again! The tube came away from the syringe & milk went all over her & the bed. ARGGGG KEVIN help!!!!

Finally got her situated again & we were able to go to bed. Talk about a welcome home party! YIKES! Once in bed, stress left & we went right to sleep.

Anyways...hope you all enjoy my stories!

Thank you to all for your continued prayers...though the journey is far from over I hope that we are at least away from in-patient visits!