Thursday, December 20, 2012

Boston Day 1

We were all pretty exhausted this morning and had a hard time getting out of bed. Shannon found a grocery store the night before to buy some food items for Sara today. She was on a "liquid and squishy" diet in preparation for surgery. Milk, juice, popsicles, jello, plain yogurt with no pieces of fruit in it, soup broth with no chunks of food in it. For breakfast she decided on a go-gurt, apple juice, half a jello, and half a vanilla yogurt.

Then it was off to the hospital. This place almost looked like a mall at times! 10 floors, many wings and subsections. Quite different from home where just a portion of the hospital is dedicated to pediatrics. This is at least twice the size and the entire facility is for children. Very kid friendly areas. One set of stairs we went down recognized someone walking on the steps and played music and had birds singing with each step you took.This is just inside the main entrance. It was enclosed in glass where balls raced around something like a little roller coaster track.


Our first stop was a 9am tour of the 10th floor pediatric wing where she will be staying. After getting off the elevator, you split to different areas like a compass. It is likely she will be staying on 10 North West if a bed opens by tomorrow morning. 36 patients currently on the floor, with a wide variety of age ranges, and all beds full. A Child Life Specialist is someone trained in child development and they walk with you thru the process to explain things to kids in non-scary, kid-friendly terminology. They help in any way they can and our experience with them in Peoria has led us to develop a great deal of respect for them. She met with us to show us the Activity Room filled with toys and movies to keep Adam busy during surgery and for both of them to play in while Sara is there for her 24 hours of observation recovery. Most rooms have 2 beds, with a dividing curtain and TV on both sides. There is also a small kitchen available with snacks and a nurse's station area for every section of the "compass".

Next we headed down to the pre-op area. It went very smooth but was mostly waiting to see someone, then talking for a bit, then waiting to see someone else, etc. We met with an initial anesthesia nurse who took vitals, health history, height, weight, temp, BP. Next was an anesthesia doctor who was able to answer questions we had and describe that part of the process with us. Sara will have a mask put over her nose and mouth and she can choose the smell she would like. Strawberry is the option of the day tomorrow. One of us will be able to hold Sara while she is getting put to sleep so it is comforting to her. She did describe, though, that it can be scary because her eyes will roll back in her head and she will kind of collapse in our arms due to being unconscious rather than asleep. I'm guessing that will be something more suited for Shannon. Sara will also be intubated just for the surgery, an IV placed, and a catheter. We found out the robotic portion of the surgery is scheduled for 5 hours and then another hour for the bi-lateral stent placement. Every 60-90 minutes a nurse will call the OR for an update and then will relay that information to us either in the family waiting room or she will call our cell phone if we are not there at that time. One of us will also be able to stay overnite in Sara's room on Friday night.

The next person was in the admitting department to sign all the paperwork and hand over a check for what could have been a new car! We are a self-pay family who then gets reimbursed by a Christian health cost sharing organization. We were thankful for the 40% discount they provided but felt like they were a collection agency at the same time. Everyone wanted payment prior to the surgery! Much gratitude for the people who made pre-payment possible and the scrambling that took place to make it happen.

Once things were done in the pre-op area we made our way to the urology department in a different wing of the hospital. We set our coats down expecting another wait but were immediately taken back to a room. Before we sat down and got comfortable, the door opened and we met Dr. Nguyen for the first time, as well as 2 other people from his team. He explained the entire surgery to us and then took the kids to pick out a toy while one of his team members discussed more details and answered all our questions.

Sara will probably get 4 small portal incisions (could be 6) near her belly button for the scope and instruments. Dissolving sutures will sew up each incision so we won't need to go to the doctor for removal. The stents going from the kidneys to the bladder will be removed under anesthesia by our urologist in Peoria, date to be determined. Dr. Nguyen will cut a small incision in the upper ureter just below where the kidney connects and enter to remove all the kidney stones in that area. He will then remove the stones in each of the kidneys themselves, as well as in each of the sacs inside the kidneys. The stents are placed to allow the urine to drain and not affect the healing process at the incision point. There is some concern about the level of bacteria that will be distributed into her body because the stones contain bacteria and that will be dispersed as they are removed. The surgery is very tedious and Dr. Nguyen needs to be cautious so as not to damage her kidneys in any way. The IV will remain in until her discharge sometime Saturday late morning if all goes well and she will probably have her catheter taken out early Saturday morning. With the stents in place, they do have a tendency to rub a little so it is quite likely she will have some blood in her urine as she is healing. Dr. Nguyen will give us direction as to the timeframe he would like the stents removed once back home. If we want to come Monday before we fly home, he will make time to meet with us and make sure everything looks good to travel. She will be sore and activity should be limited, but it is not the level of soreness as if they would have had to cut thru muscle for a regular surgery.

Next we grabbed lunch in a small dining area. Sara sipped chicken broth and apple juice. Thankfully, the food went much better than I expected today. She never complained that she couldn't eat what we were eating and we always came up with something on the list that she was satisfied with.


Might as well skip naps and head to the aquarium. Sara may not be up for it after surgery. We saw lots of neat things, which I will cover in a separate post tomorrow. Then off to dinner at Applebee's. Sara's special treat? Milk and vanilla ice cream!



Back to the hotel for baths and bedtime snacks. Adam picked a popsicle and Sara finished off some vanilla yogurt. No blood pressure medication tonight as it won't be out of her system in time and the anesthesia will already lower her blood pressure.

Early morning tomorrow. We have to be at pre-op at 6am for a 7:30am surgery.

I am thankful that a few days ago I got a picture in my head when I was trying to fall asleep. A few years ago I saw a video in church of a young man walking on a sidewalk in a large city. Think New York and people passing by. He wore a back pack and was listening to music with headphones. The video started with him walking on the sidewalk and you could barely hear his music but the noise of the city was drowning it out. As the video went on, the music got louder and the traffic noise, horns and sirens, voices of people faded out more and more. The man stopped at a crosswalk area and closed his eyes, totally consumed by the music which was all you could hear at this point of the video. That is the place I have gone to. Part of my world is chaos around me, hustle and bustle and noise and sirens and information overload and nurses and doctors and procedures. But while that is going on I have another place of peace and music playing. Don't misunderstand. I'm emotional. Highly. It's my baby girl. I fully realize these are the last moments I am seeing her before foreign instruments are inside her to take out what is necessary. There could be scars that will be reminders forever. I just feel protected and watched over. "I lift my eyes up...my help comes from the Lord..."

1 comment:

Jenny said...

Oh my...JoLynn! I don't have words for what is going with you guys right now....definitely have everyone in my thoughts and prayers.