9:30 this morning was our best moment of today. Sara's pain was under control, she was alert and talking, and she gave nurse Anna some pouty lip and attitude. It was our goal to get her out of bed and walking a little, then go for another wagon ride.
Here she is from her wagon ride last night.
Excitement was in the air. Then she got her dose of valium thru her IV and we never saw that side of Sara again for the rest of the day. It just knocked her out, which meant she couldn't get up and move around. Her fever came back and her belly got more distended with gas. She was even starting to get poofy up around her chest and wrapping around her back. Her nausea was worse, vomitting brown bile and then dark green a few hours later. Numerous times she woke from a deep sleep feeling like she had to throw up, dry heaving at times. The biggest problem is that her bowels have completely shut down and are showing no signs of waking up. Because the portion of the kidneys that produce urine were opened, some urine spilled inside her and irritated her stomach as well as her bowels. That, combined with the length of anesthesia, caused her bowels to just say "nope, I'm stopping." All of the air in her now is just from her breathing in air and her bowels aren't squeezing it back out. The past few times we have tried to give her oral pain medication it takes about 10 minutes to accomplish because she is just refusing to take it. The oral medicine works so much better and lasts longer than the morphine or valium thru IV but it can also slow the bowels. The doctor wanted to try straight Tylenol but we all think she just is nowhere near ready for that. We have tried some anti-nausea medicine and changed one of her antibiotics so we don't have to draw labs to check levels. Nurse Anna was getting so concerned about the air in her belly that she thought the doctor should do an x-ray but so far they are holding off. Also, if the vomitting gets any worse they will have to put a tube down her nose to suction some of the air out, which will be extremely uncomfortable. She has gotten 2 suppositories to try to get things moving.
Dr. Marc (on call and part of Dr. Nguyen's team) told us early this morning that we would not be flying home tomorrow as planned. She needed to stay in Boston at least 1 night, if not 2, after she was discharged. And there was no way she was going to be discharged today. Things can turn around quickly but we need her to get the gas out of her tummy to help with the nausea and want to start eating. We also have to get the fever and pain under control.
Finally tonight after Shannon went back to the hotel with Adam I coaxed her into trying to get up to go potty. She kept saying she didn't have to and the nurse was ready to give up but I told her to at least try. She peed right away. It is filled with a lot of blood, but that is normal. Then I asked her to try to toot and she was successful with a tiny one. A very small step in the right direction! She is in so much pain to sit up, move, take a step, or even just stand still she moans and says "ouchy ouchy ouchy" over and over again. Just walking to the bathroom and then standing still to get a clean nightgown caused her to start shaking due to pain and exhaustion. She has a very high threshold for pain so this tells me just how bad she is hurting. Thankfully Dr. Marc walked in at that point and saw that we couldn't push her any more than we were.
Dr. Marc spent some time talking about her kidney stones and the procedure in more detail today. He said he has never seen a pediatric case with such large kidney stones. Almost the entire inside space of her kidneys was completely filled with one large stone. He actually pulled up the x-ray to show us a before surgery and after surgery shot. She started out with a stone that measured 39mm on the left side, or just under 4cm. The right was about the same or a little larger. The after surgery x-ray shows that there is probably some residual leftover on both sides that is still fairly large, around 1cm. Many have asked about the shock treatment and if that is possible. She is a good candidate for that because the stones are soft and would break up easily. However, the other factor is placement. It doesn't do any good to break the stones up smaller for the body to pass if they aren't located in an area that will allow them to have a clear pathway to exit. The plan for removing the final remnants is still undetermined. I would have to say I'm not real excited to know there may still be follow up procedures in relation to this so I am putting that out of my mind and focusing on the urgent right now.
We are letting Sara rest overnight but keeping on top of her pain medication. The other big goal to work on is having her blow through the party favor to keep her lungs expanding. Throughout today we have seen a decreased capacity in her ability to blow it all the way out. If we aren't careful, pneumonia can set in and we don't need that on top of everything else. I would also say I have seen a decrease in her general demeanor. She has stopped talking and rarely even answers yes or no to a question. She avoids eye contact and tends to just stare off blankly. I'm not sure if she is frustrated, in pain, or just a sign of something else going on. She is one strong little girl but this is all really weighing on her. This is our normal the past few days. I am praying for a smile tomorrow!
On a bright note, the hospital has a new program for the very first time this year. The public has donated Christmas gifts and then for a few days parents are given vouchers to shop in a special room. The presents are then even wrapped so a child staying in the hospital around the holidays can have something to look forward to. Shannon did some shopping for the kids this orning. Adam begged and pleaded to open a present and discovered a large bulldozer with a ripper attachment on the back! We are hoping it fits in the suitcase on the way home.
We got another surprise tonight when someone dropped off 3 bags of Christmas gifts--one bag for Adam, one for Sara, and one for us! Thank you to the very special family from Illinois who so thoughtfully and uniquely sent us some love when they found out we would be spending Christmas in Boston. We are hoping Sara has some increased energy tomorrow to open her presents or at least be happy about someone else opening them for her.
Adam was ecstatic to open his presents and find a fire truck book and a fire rescue vehicle with doors that even open. He asked me to read the book to him twice. His cold has kicked back up a little while we are here but thankfully they have still let him come in. He has been on excellent behavior and even has a little couch to nap in Sara's room for a few hours each day. Shannon is going to take him to the Children's Museum in the morning to give him something fun to do since we probably won't make it as a family.
So we have contacted the hotel and they are extending our room and offering a $5 discount per night. It's not much but we are getting a really good rate and didn't want the extra hassle of changing locations now. The car rental place is extending the mini van until the 27th for now. We discovered there is laundry facilities in the hospital so Shannon will be bringing dirty clothes tomorrow as that will be the last day we have clean clothes thru. The airline put lots of medical notes in our record for when we rebook the flight home and Sara should be able to get wheelchair assistance throughout the airport. We will also request a flight that isn't booked full so she might be able to lay down across a few seats after take off. It is pretty unlikely that she will be able to sit perfectly straight up for 2 hours. Right now things are open ended. We aren't booking a flight home until Sara gets discharged. Shannon an do work remotely from here. The only problem we could run into is that Adam is supposed to be at the local hospital on Friday for part 1 of his surgery to put in a stent on the right. In hindsight, why didn't we just have both kids undergo surgery while we were here and request for them to be in the same room! We had no way of knowing things would turn out like this for Sara.
There is a slight chance of snow for Christmas Day in Boston. Maybe we will get a white Christmas...with our whole family together. Christmas is what you make it. This year will be a year that we will never forget.