We finally made it out!

Well, it's been a few days since we've posted, but we wanted you to know that the doctor arrived in Amy's room last Thursday night about 10:45 p.m. We drove away from the hospital a little after midnight, and spent the night at my grandmother's house. On Friday we drove to Fresno, which was a bit of a challenge for Amy, but she made it OK. Bumps in the road and turns were especially difficult for her, so we tried to choose the smooth pavement! It took us 8 hours to get home because we needed to stop several times for long breaks, but we made it home at 7:30 p.m. Friday. On Saturday, we washed clothes and re-packed our suitcases and our car so that we could leave for our week of family camp at Redwood Christian Park, where we are now! Whew! Amy is doing very well, and is tolerating the oral pain medications without nausea. We are spacing the medication times out more and more, and they still seem to be effective. She is able to walk around the camp on her own for the most part. There is a golf cart "taxi" for those who need a little assistance, and the driver knows to be on the lookout for Amy when she needs a ride somewhere. The weather is perfect, the teaching is good, the fellowship is wonderful, camp staff cooks and cleans up, and we are enjoying relaxing here. Amy did a bit too much yesterday and missed dinner and the evening session in order to sleep, so we decided to stay at camp today instead of go to the beach with everyone else (Wednesday is beach day at camp). Megan, Amy's cousin, stayed at camp with us and we had a nice outing to Boulder Creek for lunch and looking around the shops for a little while. Then, back to camp for a nap!
Thanks to all who have been following this blog, praying, and sending best wishes our way. Amy will enter another post later today or tomorrow.

We're trapped in the hospital and we can't get out!

We are still in the hospital, and it's 9:45 p.m. The doctor has been in surgery all day doing more procedures like Amy's, and he hasn't shown up to discharge her yet. Here are a few of the positive benefits to staying this long:
1. Amy had room service for all 3 meals again today. Mom and I had dinner compliments of the Ronald McDonald House (they serve lunch and dinner all week, at no charge to the patient families - even those who aren't staying there).
2. Amy got to watch some of her favorite t.v. shows without being interrupted.
3. At 5:30, a member of the Healing Arts team came to Amy's room and entertained us with our own private guitar and singing concert for half an hour! He was very talented, and his songs were quite soothing. He gave concerts and toured in Russia for several years, and founded an American/Russian youth organization. It was a wonderful treat.
4. Amy's bed is comfortable and she can sleep all she wants.
5. When we finally get out of here, the traffic will be minimal.
6. The parking lot doesn't charge if you leave after 8:30 p.m.
7. Our hospital wing is fairly empty and it is quiet tonight. No crying babies tonight.
8. The extra rest is good for healing.
We do look forward to leaving, however, so that we can get a bit of rest before we have to drive to Fresno tomorrow.

Balancing act

Working on finding the balance of oral pain medications, anti-nausea meds, and food. Had a rough night of nausea but now we are on track and think we have this figured out. Doctor has a busy day so we may not get out till later today. That's OK, as we are just resting and hanging out. Amy watched The Price Is Right again today.

Leaving tomorrow!

Dr. LoSasso said that if Amy doesn't need morphine tonight, she can leave tomorrow! Yay! She hasn't needed it all day, and she will probably be fine tonight. We will spend one night at my grandmother's, then drive home on Friday. Had another dog visit today, which was fun. Thanks for your continued prayers, especially for tomorrow night when mom and I will be the nurses taking care of her!

What a difference a day makes

Amy improved so much yesterday, it was fantastic! She was able to eat a slight bit more, and get up and walk. She requested her i-pod and I caught her humming to herself! She even sang! Wow.
Today is even better - this morning after she woke up she wanted her phone so she could text her friends, she watched a video on her phone that she had made with her cousins and laughed a lot, watched The Price Is Right, and a DVD of her cousin Allegra's dance class. There is a 14-year old boy who had surgery yesterday and Amy walked to his room to visit with him and encourage him. Then she went to X-ray to have her pre-discharge x-rays (got to ride in a wheelchair for that one).

Glad yesterday is over!

Yesterday was a very difficult day for Amy. She was in a cycle that she needed to break out of - her epidural medication caused nausea, which made it nearly impossible for her to eat. In order to transition her to oral pain medication, which would decrease her nausea, she had to eat something so she could take the pills. She tried eating a few spoons of broth in the morning, but threw up. So the nurse decided to just stop the epidural medication and lessen the nausea enough to enable Amy to eat some crackers. That meant that she experienced the pain sensations in her chest that had been blocked by the epidural. Thankfully, after a long day of alternating with pain and pressure in her chest, and nausea, she made it off the epidural completely and onto oral pain medication! Whew! She still receives Valium through her I.V. when the pressure is too intense in her chest, but overall she is very much improved. Last night she sat on the edge of the bed with her feet hanging over the edge for about 15 minutes, and that was a victory. Today she has much work in store: sitting up in bed again, moving to a chair and sitting in it for a while, eventually walking sometime today, eating, and more.
She had quite a lot of pain about an hour ago (7 on a scale of 10) and has received some pain meds. We will attempt to get her out of bed soon.

Sunday night

First thing tonight, I want to let everyone know about my wonderful cousin, Matt Anderson, his wife Donna Balsam, and their two lovely daughters, Eva and Ruby. They live about 15 minutes from the hospital, and have been our "home base" for the hospital time as well as for the consultations we have had with the surgeon during the past months. THANK YOU SO MUCH! It is fantastic to go to their home to shower, nap, etc, and my mom and Dan have been spending nights there.
Amy sat up today, and even stood up (assisted) for several minutes today! It made her nauseated, but she did it anyway. She also used the breathing device and did some good breathing and holding her breath. Nausea is her constant companion, and an unwelcome one at that. It is a result of the pain medication she has. Please pray for relief of nausea for her, so she can get up more regularly, and begin eating. Pain medication has been reduced tonight, so she can perhaps not feel so sick. A little pain in exchange for not feeling nauseous isn't a bad exchange.

Sunday morning

Amy had a good night, no vicodin or morphine required! The nurse visits were less frequent, so Amy slept a lot. Today, early afternoon, she will attempt to sit on the edge of the bed and dangle her feet over it, then perhaps move into a chair. Late afternoon/early evening they will have her try to walk! She has had some apple juice, so is on her way to eating real food again. I'll try to post some pictures later today, and give an update.

Re: photos

Hi, just had to publish the photos quickly while I was online. Top is "after", middle is "before" bottom is amy in her room. Read all about it in the long post from today!

Amy is doing very well the day after her surgery.  I have created a nice blog complete with photos, but it is stuck on Amy's computer until I can get consistent wireless service in the hospital.  So, just wanted you all to know that things are going well, and I'll post more later today (I hope!)

Amy's surgery went very well! The surgeon and anesthesiologist were pleased with her response to the anesthesia.Amy’s surgery went very well! The surgeon and anesthesiologist were pleased with her response to the anesthesia, and she has had no nausea (partially because of anti-nausea medications, I’m sure). Here’s a picture of her in her private room! And there are before and after internal pictures, as well, which are taken looking from left to right inside her chest cavity. The before picture shows her heart at the bottom of the picture, and the top of her heart is not visible because her sternum is lying on top of it, squishing it. In the “after” photo, you can see the top of her heart at the bottom of the picture, with a nice space above the heart, then the bar running through her chest, and her sternum on top of that.

She had a night full of nursing care, administering various cocktails and checking up on her (I observe this routine from the “comfort” of my chair-bed in her room). Her pain management doctor and nurse came by this morning, and were very pleased with the low level of pain she was experiencing. In fact, they said that they wished they had visited her first on their morning rounds, because they like to start their day on a positive note!

Today she slept a lot. She will begin using a breathing device tomorrow that will expand her lungs. This will probably be somewhat painful, but it needs to be done so she can get ready to play the flute again (that one's for you,k Mr. Lack :)

Tomorrow the goal is to have her sit up and dangle her legs over the side of the bed. She is not looking forward to moving, as it causes discomfort.

By the way, Amy has corrected me a few times when I refer to her nurses by incorrect names. "Mom, that's not Christine, it's Suzanne." Who's the one that's supposed to be "out of it" around here, anyway? class="MsoNormal">Thanks for your prayers and concern for her, and your texts and blog comments. She misses you all!

TODAY IS SURGERY DAY!

Amy is in surgery! We arrived at the hospital at 7:00 a.m and went through "fast track" admissions, since we had done all the paperwork on Tuesday. Amy's blood was drawn for the white blood cell count, and while we waited for the results Amy was able to model her designer hospital attire, complete with "shawl blanket" (see photos). The ensemble is a lovely blue and white pattern, and items are interchangeable as either gown or robe! A must for every discerning patient.
We were taken into the consultation room at 8:25 a.m., where we met with the anesthesiologist, surgeon, and nurse (A nurse accompanies the patient everywhere and is with her at all times during the procedure and in recovery. She was described as the "substitute mom" for patients while they are away from their real mom. What a nice touch.) The anesthesiologist was not the same one we met with on Tuesday, so she was briefed on Amy's reaction to the Ativan. She said that she feels Amy was just very sensitive to that medication, due both to Amy's reaction and the duration of the side effects. As a result, she will not be giving Amy the typical twilight sleep meds prior to inserting the thoracic epidural, because that drug is similar to Ativan. She will also give Amy 3 types of anti-nausea medication. Dr. LoSasso (surgeon) said Amy's white blood cell count was normal :) He re-measured the template for the bar that will go in her chest, and then we bid her farewell with hugs and kisses. We were told that we should go to eat breakfast, because there was about an hour of pre-surgery prep work that needed to be done in the O.R.
Now, we are sitting outside in a courtyard garden which has a whimsical theme and is very quiet and peaceful. A nurse came out and told us that the surgery had started about 10:15 a.m. So, actual surgery is about 1 1/2 hours, then there is an hour in the O.R. post-surgery for x-rays. Then about 1 1/2 hrs. recovery time before we get to see her.
Amy was so excited that everything was fine and that the surgery was going to happen today. Thanks to all of you for your prayers. We will keep you updated!

A Relaxing Day

Today was a very relaxing day in Encinitas. I woke up this morning around 10:00 and had a nice breakfast. Last night, my great aunt, Gina, had promised to take me for a ride in her red Mercedes convertible, Veronica. Today, Gina kept that promise. :) We went out for a joy ride and drove to Rancho Santa Fe, one of the nicest areas around. On the way back we stopped by a cute little French bakery and picked up some pastries. We also got to spend some time in a fancy-shmancy supermarket with 34 dollar fish! (it was ridiculous.) After our mini road trip, my mom and dad and I went to Moonlight Beach to hang out during my REAL last day before surgery (hopefully.) The weather was great and the water was really warm. The waves were perfect, but it was nearly impossible to body surf because the beach was a lot more crowded than it had been. We soon realized this was because the time we were at the beach was the same time all of the kids were getting out of school. Nevertheless, the beach was relaxing and beautiful. I've been feeling much better, and hopefully my WBCs have too. ;) Thank you everyone who has been checking up on me, I really appreciate it. We'll update everyone tomorrow, hopefully to let you all know that the surgery was successful!

Amy- lookin' strong, feelin' strong!

4:45 p.m.
Just heard from the surgeon's assistant. The surgeon (Dr. LoSasso) said he wants Amy to have her blood tested again Friday morning instead of Thursday, to give her body as much time as possible to work on the white blood count! So, we are to be at the hospital on Friday at 7:00 a.m.
Today we just relaxed. Dan, Amy and I went out to breakfast at a place that has been here for a very long time. We sat at an outdoor table next to a group of cyclists who had stopped for breakfast on their morning ride. Actually, there are cyclists everywhere, it seems. Dan commented that being here just makes you want to get into shape, because the weather is so great. It was overcast, but very pleasant.
We spent some time shopping (in a leisurely way; not power shopping!) and then returned to my aunt and uncle's for lunch and naps. Tonight, my aunt Gina decided it's game night, so she has chosen Cranium for us to play. We'll try to keep the competition at a minimum, but with Gina, Dan and Amy in the mix, that will be a challenge :)
Tomorrow is supposed to be another low key day for Amy, so we might just go to the local botanical gardens to stroll and admire the beautiful flowers.
Amy's attitude is great - she just wishes there were a portable white blood cell counting device so she could know what's happening in her body. Maybe someone out there can work on one of those for us...

Just a quick note to let you all know that Amy took a very long nap this afternoon, and felt great when she awoke. She has no fever, and is just fine. Yippee!

We only THOUGHT today was surgery day!

Today we were again reminded that most of life is out of our control. Here's the scoop:
Amy did not have surgery today.
Last night, as instructed by the surgeon, we gave Amy an Ativan tablet, to help her get a good sleep prior to surgery. About 30 minutes later, she was pretty dizzy and was experiencing some strange visual "sensations," such as the pillow looking like it was moving in snake-like fashion, the lights on the television weaving about, etc. She was intrigued by these effects, but I encouraged her to go to sleep, which she did. She still felt strange when she woke up at 7:00 this morning, and then about half an hour later she felt really bad. She said it was like a bad car sickness. So, she was sick to her stomach twice while getting ready to leave, then three times once we were at the hospital. Keep in mind that yesterday she was frolicking in the surf, having a great time, and was perfectly fine until after the medication.
Enter the surgeon and anesthesiologist (the Dr's).
The Dr's had a chat with all of us about what was going on. They were concerned that Amy might be sick, enen though she had no other symptoms and she felt fine until taking the medication. They did a CBC to see if her white blood count was elevetated. In fact, it was. It was 13,000 (11,000 would have been "high normal").
So, the question remained about whether or not the elevation was because of the sore throat she had last week or due to some other thing she may be just coming down with. Her surgeon said he didn't want Amy to have any chance of infection post-surgery because her immune system might be currently fighting something off, so he thought it best to not do surgery today.
Amy was very, very disappointed. She had been looking forward to having the procedure completed, felt mentally and physically ready, etc.
So, the surgeon's office is working on finding an alternate date (this Friday is a possibility). We are waiting to see if Friday is OK, and also whether or not Amy gets sick between now and then. If she is fine, then they would repeat the blood work on Thursday and see what the white blood count.
We have returned to Encinitas, where we will stay until we know what is going to happen.
What have we learned?
1. If Amy hadn't taken the medication, she might not have needed the blood test, which wouldn't have informed the Dr's about the potential infection risk. So, she might have had surgery and had infection problems.
2. The Dr's know know she may have a bad reaction to that family of medications (which is the family they use for surgery), which will change what they give her during and after surgery. This is valuable information, because one of the worst things she could do post-this-kind-of-surgery is to get sick to her stomach.
3. The Israelites had to wander in the desert 40 years, not knowing when God was going to have them pack up and move to another place. We know he is in charge of this situation, as well, and will move us forward when it is in his time.
4. In the meantime, we are not spending energy trying to guess what will happen. We will just try to realx and take it as it comes. The sun is out and it is beautiful here. We are staying with family members, including my 100-year old grandmother. God continues his belssings!

Just received a call from the Dr's assistant. Amy has a surgery slot this Friday, the 12th, at 8:30 a.m.!
Please pray specfically for her to be healthy so that we can proceed. Thank you all. Amy says "Hi, and thanks for your prayers."

Day before surgery

Today was my last day before my pectus excavatum surgery. I wanted to take advantage of the lovely Encinitas weather so I went to Moonlight beach with my mom, dad, and grandma and had some fun in the 65 degree water. :)
I also made sure to eat a lot today, because the doctor said I won't feel like eating while I'm in the hospital. Over the past few days I've had a lot of time to think about the surgery, and I'm quite anxious. There are certain times in the day when I get really nervous and excited, so I have to take some deep breaths to calm myself down. This is going to be a huge change in my lifestyle, so I've made sure to take plenty of time to mentally prepare for my surgery. The surgery is tomorrow morning at 10:30, but we'll get to the hospital two hours early to get ready for everything. We'll make sure to update everyone regarding my surgery and recovery tomorrow and throughout the week.Thank you everyone for keeping me in your thought and prayers-- I really appriciate it! :)