Sunday, October 28, 2007

Good Bye Friend

"Pooh, promise me you won't forget about me, ever. Not even when I am a hundred."
Pooh thought for a little.
"How old shall I be then?"
Pooh nodded. "I promise," he said.
Winnie the Pooh
The House at Pooh Corner

Today we lost a friend.
Hummer was a gift to me from my sweet, new husband when I graduated from nursing school. He was the pudgiest, most adorable puppy I had ever seen. I had always wanted a dog... but especially a Golden Retriever.

Today we reminisced about our life with Hummer. He did everything with us. He camped with us, hiked with us, swam with us. He sat by my side when I was sick on the couch. He played "protector" when I was alone in the house. He sat while we cried next to him when Abby was born. He gave her gentle kisses when we finally brought her home. He sat attentively near me when I was in labor with Josiah... and then gave him kisses when he came home.

Things I (Patrick) remember:
Staying late with me at graduate school when Patty was at work. Chasing the laser pointer until he could no longer stand up. Kissing Abby and Josiah. Staying outside the grocery store while I shopped, except when he decided to come and look for me. Jumping off of waterfalls when he thought Patty was in trouble in the water. Sneaking into our bedroom at night to guard us as we slept. Playing with Josiah by taking and returning his cow, then letting Josiah taste his golden fur!

Most of our memories include Hummer in some way. We hoped to see Josiah throwing the ball for him in the yard. We had even thought of sending Hummer through special training so he could become a canine companion for Abby.

It just wasn't meant to be. He will always be a special part of our family memories.

Hummer, we promise we will never forget you.

Friday, October 26, 2007

Hospital Rounds

Unfortunately for Abby we have become even more familiar with the staff at Huntsville Hospital.

Last Friday evening while I was out shopping, Abby spiked a high fever and went into a prolonged seizure. She had been running a fever for almost 6 days with no other symptoms. By the time I got home she had been seizing for more than 10 minutes and had not slowed down even after my mom had given her the Diastat. I was so thankful my mom was with her! She has such a calculated, calm presence of mind in times of crisis! Thanks mom for taking such good care of all of us!!

After giving Abby Tylenol very quickly for her high fever I rushed to the ER with my poor, baby girl struggling to breathe in her car seat. The ER staff immediately started working on Abby giving her more than 6 doses of different drugs trying to stop her seizure. She would stop temporarily, resting for a minute or two, then start up again. CT showed no changes in her ventricles, no abscesses in her neck. X-ray showed clear lungs and blood results showed no infection. Probably a virus.

Two hours after we arrived at the hospital Abby was finally resting, although her breathing was affected by all the heavy medications she had received. They moved us to the PICU where we spent the night, listening for Abby's breathing and watching her heart rate and O2 sats on the monitor. The next day she was stable but extremely lethargic, and for the most part knocked out! We convinced the doctors that we would do better at home, and were discharged early Saturday evening.

Monday things were not any better, and Abby's fever had climbed higher. She slept, and slept and didn't move unless we moved her. By early evening she had spiked another high fever and was struggling to breathe. My mom helped hold her upright while I bulb suctioned the mucous building up in her throat. It didn't help. As we watched her skin start to mottle and then turn bluish, we decided it was time to head to the ER... again.

This time she stabilized more quickly and was able to rest after another dose of Motrin and some IV fluids. We even got to see the nurse stick her vein using their nifty Vein Finder machine! It shone a green light on her skin which made it possible to see her veins clearly!! He got the IV in on the first try. After Friday night's events, and more than 5 pokes, we were not in the mood to see her become a pin cushion again.

Another unchanged CT, mostly clear x-ray and clean spinal tap. We moved to the 4th floor to get some rest. After only being on the floor about 30 minutes Abby spiked another high temp (103.6) and started acting like she was going to seize again. I started to panic until I looked at the monitor and saw that she was breathing fine, although her heart rate was high due to the fever. More Tylenol. Finally at about 4:30 am she fell asleep.

Next day we finally found the source of the fever. She had pneumonia! We were strangely relieved to hear the news, knowing at that point it wasn't something more serious.

She's home now and on antibiotics. Her tummy is upset, she's still coughing some, isn't taking her feedings well and she seems unhappy some of the time, but at least she is home. Praise the Lord for antibiotics! He is good to our family and still holds us in the palm of His hand.

As much as I like having her on monitors so I can see that she really is ok, it feels so much more normal to be home. I think Josiah is settling into his routine again too... except now he can't stand for me to leave his sight. Makes me feel loved!

Here he is goofing off under Abby's bed in room 414.
Poor guy had to find something fun to do!

Sunday, October 14, 2007

Tests, tests and more tests

Health issues with Abby seem to come in waves. The past few weeks have been full of tests and worries about various problems.

The increase in seizures still hasn't been answered, although Abby did have another CT scan done this week which revealed no changes since her last scan. This is wonderful news! We have been increasingly concerned about the combination of her new seizure activity and recent, unexplained irritability. After missing a neurosurgery clinic appointment due to a canceled flight from California (another long story), we were finally able to confirm that her shunt malfunction is not the culprit.

Reflux has always been one of our enemies, although we never realized how long and how seriously it would affect her life. Thursday our GI doc performed a Gastroscopy (upper GI endoscopy) on Abby to check for damage from the reflux. The test revealed significant esophagitis. We got a picture of it and you can tell it is red and inflamed.
Her stomach looked fine; no ulcers. His recommendation was to place a gj-tube. This would replace her button with one that has two ports: one for feeding into the stomach (g), and one for feeding into the jejunum (j). Abby would be connected to a feeding bag and pump for 12-18 hrs a day. It would deliver formula at a slow drip into the intestines, bypassing the stomach. This suggestion raises so many emotions for us, the main one being a huge step backward from normalcy.

Because we want what is ultimately best for Abby in the long run, we asked if we could try the blenderized diet to see if that might relieve some of her reflux. He agreed to give it a 4 week trial before moving forward with the gj-tube. We've started blending up regular food for her! It feels so good to be able to give her good nutrition instead of just formula. So far she is tolerating it well. One main advantage is that this diet is much thicker which will hopefully prevent her from refluxing.
We've spent the past month or so introducing Abby to one veggie or fruit at a time to make sure she didn't have any bad reactions.

Abby has another EEG scheduled for the end of this month. This one will be longer (24 hrs) and will hopefully pick up the seizure activity she has during the day and at night. We are hoping this will give us the information we need to make the best choice for further treatment. Our Neurologist is recommending the Vagus Nerve Stimulation Therapy. As I've mentioned in previous posts, this requires minor surgery and an implanted device.

We continue to pray for wisdom. It is very hard to know what to do sometimes.

ps. The picture is of the kids in their new bike trailer! It has been so much fun riding together around the neighborhood.

Monday, October 1, 2007

Dream Job

Today marks a very important day for our family! My husband Patrick starts his dream job.

Patrick and I first met the summer before I started college. We began dating and eventually got married while in college. It was fun supporting each other and struggling together through those years. Patrick decided to endure more of it than I could stand, so he continued through his masters and on to get his PhD. Yikes, there was a time when I thought he would be in school for a very long time!

I always knew his dream was to become an Engineer and eventually work as an astronaut. Our first step was to move to Huntsville so Patrick could pursue this mission by working for NASA doing his post-doc through a contractor. He continued working as a contractor after the post-doc position was completed, looking to one day become a NASA employee!

It has finally come true for him. He will now be wearing a Gold badge to work as he continues his project to develop part of the new Crew Launch Vehicle that will one day fly to space. Most of what Patrick does at work I don't understand, but I do know that today is a very special one and I'm so proud of him for sticking to his dream.

The Lord has been so good to us. He cares about our desires as well as meeting our needs.