Monday, December 24, 2012

A smile and a giggle to end the day

After our day yesterday started out so well and then headed downhill fast, I wasn't sure what to expect today. Sara got sick again in the middle of the night last night trying to take her Tylenol and Oxycodone cocktail so we went with morphine thru the IV. Dr. Marc came in and said he thought she just needed more time. He wasn't sure he would order an x-ray but he would talk to Dr. Nguyen about it in the morning.

Morning came and nurse Anna was back for the 3rd day in a row. It was nice to have some consistency of care during our most waking hours. We woke to Sara's monitor going off saying her oxygen rate was too low. Anna pushed for an x-ray because she was becoming increasingly concerned. The x-ray confirmed that there was just a ton of gas because the bowels had shut down. No blockage, which was good. It also confirmed that the lower portion of the lobes of her lungs were collapsed so it was very important to keep up on the breathing exercises throughout the day to prevent pneumonia. They took out the IV on her left hand because the vein couldn't handle any more and fluid was leaking into her hand. They also did more labs which was emotionally traumatic but I was so grateful the "A" team showed up and got it on the first try. We decided to remove the oral narcotic and go with straight Tylenol because it could be increasing her nausea and hindering her bowel movement. I was skeptical because she was still in so much pain but we moved forward with that plan. She also got another suppository. She threw up again late morning which was very dark green again - stomach bile. It was quite the busy morning.

A new on call doctor stopped by. He told us he was sorry that we were given such an optimistic plan of trying to have 1 night's stay in the hospital and flying home on the 24th but it just wasn't realistic from the beginning. Adults with as large of kidney stones as Sara's require 2 surgeries for complete removal and have a minimum 2 night hospital stay. He assured us that everything that was happening was normal and expected. Her stats were good and we had to do the most difficult thing--wait it out. He estimated another 2 days in the hospital, minimum.

We tried moving around more, going for rides in the cart, doing breathing exercises, and getting some therapy by having the nurse pat her on the back to keep her lungs loose. Gradually we started seeing improvement with her bowels. First with more gas, then stool.

Meanwhile, Adam arrived after his lengthy morning outing with dad to the Children's Museum. He was super excited about the Construction Exhibit which Shannon said he went in 3 times! I got him laid down for a nap. He even snagged one of Sara's hot compresses for his bear's tummy.

Shannon headed to the laundry facilities as we were now out of clothes. My pajamas should have been pretty clean as I had only slept in them once since being here. I have myself set up with a 1 room apartment. The chair reclines to turn into a bed. I sleep in my clothes and Shannon brings me fresh in the morning. Although today was a little crazy and I didn't get to shower or change clothes. I'm getting tired of hospital food and have a huge craving for Mexican...chips and queso, burrito, taco, chicken nachos...anything! But I'm getting by as best I can.

Once both the kids woke up, we decided to venture out for a family cart ride to head to the cafeteria and pick up some dinner. Sara was her usual somber self on the way there.

Adam was cracking me up because every venture about the hospital is a chance for a "Thomas sighting"--the robotic trains that deliver food to the different floors of the hospital. He has taken a small notebook and pen that he received from our neighbor for Christmas and is using it to document his information. How many different trains he has seen, what animal is on top, and what number the license plate is. I have no idea how many times I've heard "Dad, how about we go look to see if we can find Thomas again!" Then he comes back and tells me where he saw him, what he was doing, if the food trays were empty or full, if he blew his horn, and if he was waiting for an elevator while saying "calling elevator." Adam was also very protective of Sara in the cart and wanted to help guide it. Every time he had to stop and make notes about Thomas, he would put his foot in front of the wheel as a brake and get his pen and notepad out.

After getting food Sara said she had to go potty. I remained calm and looked for a bathroom and hoped the cart would fit and I could manage all the logistics of what that currently entails. Huge success as she actually pooped!

We headed back up to the room to give Anna the good news and have her document things officially. Unfortunately, the vein holding Sara's left IV was also now over-exerted and had to be removed. She is on the list for a replacement tonight. I just wish they could have come while she was still awake. Shannon had left to go get our laundry from the drier and I heard this strange noise from Sara that I haven't heard in almost 4 days...

Adam was blowing the party favor at one of his new stuffed animal bears and Sara was giggling with laughter and had a huge smile on her face! That may have been the very reason why Adam was here--he finally got Sara to do what no one else had been able to! She had perked up and was talking and giggling, even moving around in the bed with more ease. I looked over at one point and found her on her hands and knees in the bed. I asked what she was doing and she said she was trying to get to the water cup--there's my girl! She drank a lot more water and juice tonight, told us she was hungry, and asked for one of my french fries! I said no and she started to cry when I was throwing the remaining ones in the garbage.Her belly is still extremely bloated but she is moving more without pain and her bowels are starting to make noises and wake up.

I spent an hour of my evening doing one of the most normal things I have done since arriving--folding laundry!

This afternoon Shannon and I resorted to discussing the fact that we would have to split up in order to get Adam home by 12/28 for his stent placement. We knew Dr. Rhee didn't want to put it off until January so we felt it important to stick to that. Dr. Nguyen said if we were still here that he could do it but we really didn't want to go that route. We could have considered it a few days ago to have the same recovery time as Sara but the other downside is that the Boston hospital is making us prepay for an estimated amount of our bills because we choose to belong to a Christian health sharing organization which is not insurance. Shannon doesn't like the fact of me being here alone but agrees that we also need to make sure Adam gets the care he needs as his condition is worsening. Tonight when we were on our family walk I said "what if we call Dr. Rhee and tell him to postpone Adam's procedure a few days? We came out here as a family and we need to leave as a family." I think that will be our plan, especially with Sara improving tonight.

Hearing Sara laugh tonight was like a breath of fresh air...thanks for the Christmas pick me up, God!


Christina said...

So glad that things are improving. Continuing to pray for you all.

Jenny said...

Glad to read an encouraging post!