And so it goes...

We've had a bit of a struggle since we've been home. Yesterday was tough. Brooke did a lot of sleeping. She threw up in the morning after her first feed. She also threw up after her third feeding. She took about 2oz. from her bottle at the beginning of every feeding. That was really positive. We gave her the remainder of what she needed via the tube. We totally struggled with how to get the medication through the tube. We finally got the compounded topamax ordered today. Pick up Monday. In the mean time, we got the pills today to crush and mix with water. Up until today - this morning included - we were trying to get the beads in her. They are these beads that you sprinkle onto food. We were trying to get them through the tube. This failed miserably!! We crushed them and mixed them with water, but it's hard to ensure that it is all getting in her. So, we tried to deliver them in the bead form. Well - they got stuck. In her tube - basically there is a valve at the bottom of the tube - in her stomach. The beads got lodged in the valve and her dinner came pouring out. Wow!! I hope that doesn't completely freak everyone out. I feel like it is unfair for me not to be totally honest, since this is our reality. I was in hysterics - crying my eyes out - not sure what to do. Ryan was trying desperately to help me hold it together. In the end, we closed the button and waited about 1/2 hour. When we opened it back up, the bead had dissolved/moved/something and her pediasure was no longer flowing out of the tube. Huge sigh of relief.

Ryan stayed home today, and I headed to work. I seriously needed it. Needed to get away and get to work. I'm really looking forward to next week! A whole week of no travel, no doctor, just normal stuff like work! Brooke had a much better day today. Sounds like she's taken two really good bottles and had two really good pump feeds. I'm about to give her another one. We also have someone from Apria Healthcare coming out tomorrow morning to really go through all of this pump stuff with us - tell us what is normal and what is abnormal etc.

We Are Home!!!!

We were discharged from the hospital today. We started the day thinking that we were probably going to be there through tomorrow. Around 12, they told us we would be leaving today, and around 3 we walked out the doors. It was a crazy ride home. We brought two cars in case Ryan or I had to head home (he was a bit scarred after his public transportation incident from Brooke's last UCSF admission). That meant that I rode home in one car with Brooke and Ryan took the Tahoe. Brooke is having a hard time burping, which means that they sneak up and make her spit/throw up. So...we stopped rather abruptly on the corner of Market and Duboce in SF and I ripped her out of the car seat. OK-that's a bit dramatic, but it's not too far off. She spit up, but not too much. Just what was on top of the burp. We got stuck in all kinds of traffic through Sacramento, Brooke tried the gag thing again - but was unsuccessful that time, thank god - and worked her first poop out since the surgery. It was eventful!!!

Ryan and I worked together to get Brooke's first 'at home feed' done. She took 2oz. from the bottle - no more - wouldn't do it - we then hooked her up and got her medicine in with the last 2 oz. that we gave her via her tube. I just want you all to know that I have an amazing husband! I was going to lose it trying to get her medicines all figured out. Somehow we thought we'd just suck em all up into a syringe and shoot them into the tubing. Little beads of medicine don't go into or out of a syringe well - or at all for that matter. He pulled it together for us and made it all happen. He even paused Hannity to do it!

Dr. Sherr - Brooke's neurologist - came in today before we left. He noticed that Brooke looked at him when he walked in. We see these things, but it is nice to have a Neurologist that knows his patient - our daughter - well enough to see these differences, this progress, as well! He did say that the decrease in appetite that has come along with the Topamax is here to stay - as long as she's on the medication (which is doing so much for her seizures) her appetite will be poor. He feels like we have done the right thing by getting the g-tube. He said to keep giving her stuff she likes - make eating fun - and get her what she needs through the tube. That means that she can keep on eating salami and ice cream! What a diet.

I'll post some pictures of the g-tube - her g-tube - in a few days.

Some pictures

This is a sketch of the peg tube they used for brooke. I'll take a real picture and post it. The 1/2 circle goes in her stomach and the long end is on the outside - it's all you can actually see. As you can see, it's not very big.

Brooke and mom - pre-surgery...This was an early morning and you can tell on both our faces!

Brooke well after surgery - after her second dose of morphine. Sleeping soundly finally.
Grandma & Aunt Kelly came by today. They brought dinner and drove me back to Alameda. Brooke is feeling good enough to be picked up and held now. She was very comfortable.

The pictures that I promised. I am in Alameda now - at Ryan's parents' house. Ryan is doing the overnighter at the hospital with Brooke. She did well today. She did throw up once. But we've been pumping the fluid in her, and I think her body finally said 'enough!! I just had surgery!!" She's happy to be with her daddy. She looks at him more than anyone. Must be something about those eyes they share...

Surgery

Brooke's surgery went well. She went in at 8:00am on Monday. They started the anesthesia (spelling??) at 8:30am and we left the room. The surgery only took about 20 minutes. Brooke took a while to wake up and we had to wait a bit longer to go in and see her. Apparently she doesn't respond well to fentenol. She was very groggy and in quite a bit of pain yesterday. They gave her a few doses of morphine over the course of the day and night. She woke up in much better shape today. She was smiling and playful. She gets tired quickly and sleeps a lot, but she is tolerating the g-tube very nicely.
We are giving her all of her medications through it at this point. That means her zonegran, topamax, nexium, levo-carnitine, & depakote all go through the tube. We are feeding her by bottle, but give her whatever she is not taking via tube directly therafter. Right now, she is not taking a lot from the bottle. An ounce max per feeding, but we'll work on that when we get home.
Our goal - to be independent of the g-tube, but use it to Brooke's advantage - for a better quality of life. We want her to get her med's through it and some extra water, but we're hopeful at this point that she will get the majority of her calories through the bottle - not the tube.
I'll throw some pictures of her on here as soon as we get home, so check back later in the week. As for going home...it looks like tomorrow if everything keeps going as it has. If she continues to tolerate her feeds well, doesn't vomit, isn't experiencing swelling or infection, than tomorrow we'll leave.

Thank you to everyone for your messages of support! Also - a special thank you to Jeremy DeMar who came to our house on Sunday and picked up Cali dog for the week!!