Tuesday, December 25, 2012

Jello, a cracker, and a thumb

I was hoping for snow on Christmas but while the weather in Boston was calling for a chance, apparently it is like back home and only accurate some of the time.

I was extremely frustrated with the night nurse last night when Sara woke at 3:30am writhing in pain. Anna had done such a good job of keeping Sara's pain under control throughout the day. I told her "you need to wake her for her pain medication." She responded "I didn't think she was getting much." It had been 6 hours since she had Tylenol and 10 since Ibuprofen. Those are the only pain meds we are doing right now and she had absolutely nothing in her system. It took me a half hour to calm her down...one ticked off Mama! I was at the nurse's station at 7:15am to make sure they were prepping for her next dose.

We started the day with a visit from the doctor and his team of 2 following behind. He asked how Sara was doing and I ran thru the list of improvements from the day before. He didn't even look at her belly, just talked to me. The first thing he said was "I am ordering more labs this morning to check her potassium levels" to which I pushed back with "Come on, really? She has had such awful experiences here with blood draws. Is it really necessary?" I think I totally caught him off guard because he just stood there staring at me and didn't say anything for a moment. Then he asked one of the other doctors what her levels were yesterday. 2.3 Apparently 4. something is normal. He agreed reluctantly but said if she threw up again he was ordering it. As he was walking out of the room, I mentally stuck my tongue out at him. The nurse confirmed that she thought her potassium was better and showed me another indicator through her heart wave pattern on the monitor.

I ordered breakfast for myself...I mean Sara (if I order like Sara is eating it, then I get a free meal!) and then we walked to the bathroom. I moved the wagon cart out in the hall and for the first time she walked from the bathroom to outside her room! We headed down to the lobby for a change of scenery while my breakfast was being cooked. I got snagged by security for not having a name badge on, even though I haven't been out of the hospital since walking in on Friday at 6am. What day is today? We headed toward the cafeteria and spotted 3 different Thomas trains.


Nurse Ruth decided to take Sara off the monitor and just periodically hook it back up to check her vitals. A step in the direction of reducing the amount of equipment she is attached to.

Back up in the room for some rest. I had the curtain to her room window open so I could see Shannon and Adam coming. I excitedly waved to them. Adam started beaming, then tripped and I saw his face disappear as he did a face plant on the floor. Up he popped and ran thru the door to give me a hug and kiss.

After a bit I got a break to take a shower. I had been in those clothes for 2 days and it was the first time I curled my hair since last Thursday. A few laps in the cart before lunch and some walking. Shannon ordered food in the room with Adam and I took some time venturing out to eat in the cafeteria by myself. I was very excited to have such an awesome Christmas lunch meal. It was hot and actually tasted like homemade food.



Sara thought she might be up for some food and ate 4 bites of jello! Finally at 2:00 we got both of them asleep for a nap. I napped myself...or passed out might be the better terminology...until Sara woke me at 4 crying she had to go potty. Unfortunately she had already had an accident in the bed. Because she was still half asleep she was hysterical crying about it, wouldn't open her eyes, etc. These are moments when I can tell she is feeling better because she reacts with some of that 3 year old drama that she is so good at. She fell back asleep and at 5:15 we decided we needed to wake both of them.

We ordered dinner and thought we would go for another ride while the food was cooking. This time we decided to park the cart at the nurse's station and let Sara walk back to her room, about 5 or 6 rooms away. It was a long walk for her but she was cruising and holding onto one of her teddy bears. Her spirits were great, she was talking and smiling. These past few days Adam really seems to bring that out in her when no one else can. I think that walk was a little much for her as it made some nausea set in which required meds thru her IV to calm her tummy. We opened her Christmas presents for her but since her tummy was upset she was having a hard time being excited.

Once her tummy perked up I called both sets of grandparents to tell them Merry Christmas. I am sure it was very unexpected for them to hear her voice, however soft it may have been. Sara also decided that she wanted something else to eat. She nibbled on a graham cracker while I sat on her bed and told her stories of when I was in the hospital giving birth to she and Adam. She listened intently and smiled when I told her they wrapped Adam in bubble wrap to keep him warm.


It was a day of more positive strides. Less nausea. More walking. No fever. My restful heart rate and BP. Better bowel sounds. Lots of poop, even though she had a few accidents. And the lower lobes of her lungs were no longer collapsed. Still lots of progress needed to get home safe but we are so much better than a few days ago.

Looking at Sara sleeping, she is peaceful. Finally she is sucking her thumb. For days there have been so many things hooked up to her that she hasn't been able to and even when she was freed, she got frustrated and would say her thumb didn't fit. I know I have been trying to break her of the habit during waking hours at home. But if sucking her thumb brings her comfort after a week like she has had, you won't find me saying no.

The hardest part about today for me was walking the halls and seeing all the empty beds. Over the weekend, nurse Anna indicated it was the busiest she had seen it in the 6 years she has worked here. Then yesterday hit and 21 out of 27 beds are now empty with kids being able to go home for Christmas. At least we are all together as a family. You know, before we left for Boston my life was so chaotic and really has been the entire year. I have felt very tired and weary with trying to manage extra things in my schedule and just not being able to keep up on everything. I was constantly pulled in so many directions. Then we got on a plane to come here and it's like having tunnel vision. I have no idea what I was working on at home. All the things that were so urgent before suddenly aren't. The laundry and the housework and the deadlines have all faded away as I am focused on caring for Sara in our little 1 room apartment that is 10 South, room 114. So in that regard I am very thankful for this Christmas. It's not about presents or lists of things we have to buy. It's about family and perspective of appreciating where we are. I will never forget this Christmas because of Sara's surgery. I am also hoping I will never forget the perspective it has brought me about what my Christmas focus should be.

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!

Sunday, December 23, 2012

Time to postpone our flight home

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.

Saturday, December 22, 2012

Staying another night

Today has been a day of one step forward, two steps back. Drank fluids, threw up. Fever. Drank fluids. Catheter out and went potty for the first time but extreme pain to get out of bed and walk. Threw up. Relief from pain meds and reduced fever. Ate some Cheerios. Threw up. Fever back.

We started the day with 4 goals - sit up, eat, go potty, walk. I could tell pretty early on that we weren't making very good forward progress to warrant going home by late afternoon. We were hoping that one of the IVs would be able to come out but since she was still throwing up, they wanted to keep all open access in tact.

Combine the ups and downs with an awful blood draw where the lady was poking around for 5 minutes and Sara was moaning in pain and it was a pretty crummy start to the day. Then another blood draw later to make sure she still had enough tolerance for more pain meds, which was more poking around and an unsuccessful stick. She and I both ended up crying. I asked what the plan was at that point and the phlebotomist said he didn't have one. Not exactly what I wanted to hear. Our nurse came back in from break and I expressed my displeasure. She said she had heard and wasn't happy about it either. She called urology to ask if we could skip another draw and they said unfortunately, no. She requested a different person and promised if someone showed up who she hadn't worked with before she would send them away for someone else. That stick was still challenging because she had to try the band on both arms to choose her preference and that was terribly painful. Thankfully she was successful on the first try, though. I was at the point that I had to walk away and keep Adam amused. I just couldn't take seeing Sara like that anymore and still let someone do their job without ripping their head off.

We accomplished the sit up. The catheter came out around noon and she went potty on her own later in the afternoon. She has gotten out of bed and walked to the bathroom twice. That sounds so matter of fact and easy, when in actuality it is a process that wears her out. Just sitting up in bed she is in a tremendous amount of pain. Then trying to get out and walk, each step is painful. Any way I try to help and lift her, hurts her. There just isn't anything else we can do but try to manage the pain until she starts to heal. Unfortunately, she needs to move to help heal and who wants to move when it hurts that much.

The fever that is setting in is probably lung related. When undergoing that length of anesthesia, the bottom portion of the lung tends to collapse because the ventilator doesn't push as much air in to inflate the lungs as breathing would. They brought in a party favor that she needs to blow through and unroll as much as she can to help with the inflation of her lungs.

Around 2:30 a doctor stopped in and determined she would be staying in the hospital one more night. Shannon and I agreed that it seemed like she just wasn't making enough progress. The nurse concurred and felt like Sara just wasn't ready and didn't want to put her in a dangerous situation where we couldn't manage her pain.

This afternoon she is getting an oral cocktail of Tylenol and Oxycodone. That is a pain option that lasts much longer than something they can give thru the IV. Once it kicked in, it seemed to help with her pain. We are supposed to ask her where the pain is so they can tell if it is at the incision points/muscle related or if it is from a bladder spasm. So far it all just seems to be general pain from the surgery which is more constant rather than a sudden, sharp pain from a bladder spasm.

Adam brought Sara her bear this morning. She seemed happy with it, although we haven't seen a smile all day. He did a good job staying amused and busy. Both kids took a great nap in the hospital room in the afternoon.


Adam's favorite thing is to walk the hospital looking for Thomas, the robotic train cart that delivers food. He runs back to the room and tells me where he saw him..."Mom he was right outside the elevator and said 'Calling Elevator' and then the door came and he wheeled right in. Dad says he has his own garage door opener!"

By 7:30 Adam was getting squirrely so Shannon took him back to the hotel for bath and bedtime. They had a great night's sleep last night snuggling in the big bed together. Hopefully it can go just as well tonight. He was a little fussy tonight saying that he wanted me to go with him and dad to stay with Sara.

We have the same night nurse as last night so it's nice to see a familiar face and the same day nurse will be back tomorrow. We are going to try to get her up and walking around in a little bit, then go for a ride in a wagon. Hoping tonight and tomorrow are more of a two steps forward, one step back.

I am a little nervous at this point about keeping her comfortable outside the hospital and the plane ride back. Not only will the seat belt in her car seat be a struggle because it is in the area of the incisions but the seat on the plane sits completely upright and it is painful for her to sit up that straight. Also hoping we can get more sleep tonight than the few hours we got last night.


Friday, December 21, 2012

Completion of surgery day

We have spent a lot of time in the cafeteria today. Adam is especially partial to sitting by the turtle.


After lunch we headed back upstairs for another update. They were still working on the left side but things were going smoothly. I knew at that point to prepare myself for a longer than anticipated day. We found a couch for Adam to crash on and took a little break until the next update.

This is one of 4 family waiting rooms on the 3rd floor surgical area. There are 26 surgical suites and today was a very busy day with over 100 surgeries being performed. Their process of communicating to families through RNs is phenomenal. We were treated with respect the entire day and definitely made to feel part of the process. No one was impatient or rude or seemed rushed for time when we asked questions. We met families with children from a few months old to teenagers, travelling from Bermuda to Mississippi. In fact, I'm not sure if we met anyone who actually lived in Boston!


Adam only napped for a little over an hour but long enough to get us to the early afternoon update, which indicated they were finally done on the left side, including the placement of the stent. Off we went to find more things to do...lots of neat fish tanks throughout the hospital.


We also found what Adam has dubbed as "Thomas" - a robotic train that roams the hospital making deliveries from the cafeteria. He thought it was totally cool and kept looking for him. He is sure that Thomas will show up on Sara's floor tomorrow so I am hopeful he won't be disappointed!


I think that was also the excursion where we played more Ms. Pac Man and found the jukebox and stage. If Shannon tells you anything about having photos of Adam and I dancing on a stage with a giant candy cane piece and 2 large plastic penguins, I have no idea what you are talking about. I will admit that the day was starting to get long.

A late afternoon update was that surgery could be done by 5:15 so we grabbed some early dinner from the cafeteria and brought it up to the surgical floor in order to be close by for the next update.

Just before 5pm that time was extended to 6:30. Dr. Nguyen entered our family waiting room to talk with us at 5:30. The robotic portion was complete and the first words out of his mouth were "I'm tired!" He explained everything in detail, some of  which I am hoping will be written down for me before we leave, like the medications we will need to continue for a bit. He told us the surgery was very intricate. One of the problems he ran into was that the stones were so soft when the robot would try to grab them, they would break into smaller pieces and make it more tedious to remove them. Another issue was that she was filled with gas and her colon kept getting in the way. Some kids are more gassy with eating dairy products and she had her share yesterday between yogurt, ice cream, and milk. All on the approved list but some kids react differently than others. She will be on 2 very strong antibiotics to fight against all the bacteria in her body from the stones breaking up. There is also a muscle relaxer because sometimes the stents cause the bladder to spasm. He is hopeful he got all the stones removed but will have Dr. Rhee do a follow up ultrasound in about 2 weeks. If there are any remnants she can undergo a shock treatment and they will break into small pieces and pass thru her stents before they are removed.

Before our nurse liaison, Doris, went home for the day, she stopped in with a couple more friends. Adam picked which one would be for Sara and which he would keep himself. Then he spent the next hour hugging them and kissing them. Adam kept asking if he could see Sara yet and was very disappointed when he had to go back to the hotel without seeing her. It was going to be a few hours before she was moved to a room and he couldn't last that long. He took Sara's bear with him and planned on returning with the gift the next morning.


Finally at 6:45 I got to see her for the first time. She was pretty rough around the edges. Puffy in the eyes. Red spots on her forehead and tape marks on her face from necessary surgical items now being removed. She was barely awake but in quite a bit of pain. Twice within an hour she woke grimacing that her tummy hurt and they had to give her more pain medication. An IV in each hand and a catheter. Under her little nightgown she had 4 bandaids on her belly that protected the ports of entry, now stitched shut. I gave Shannon an opportunity to go back and then he took Adam back to the hotel.


We made it to a private room on "10 South" around 9:30. This wing is typically for organ transplant patients but the other area was completely full. It took some time to get all her medication administered - antibiotics, muscle relaxant, Tylenol. She will also get 2 different pain medications alternated throughout the night. She has been very thirsty, which is good, but it also causes her to cough and that is very painful. The nurse tried holding a pillow over her tummy to provide some pressure but she didn't like that. She threw up twice and then we had to change her bed sheets. She is definitely not in the mood to be moved in any way right now. And she is frustrated that things are inhibiting her ability to soothe herself by sucking her thumb.


She is finally going in and out of restful periods of sleep and the pain is being managed. The last time she woke she was asking more questions about what the boards were taped to her hands in order to keep them flat for the IVs. And...she wanted a stuffed animal next to her, tucked in with a blanket and given a sip of water. I told her "Sara, you are going to be a great Mommy someday." With a scratchy throat, she whispered "I'm already a Mommy." There's the baby girl I know!

It has been quite the day. I am exhausted but wide awake. We went from thinking it would be a lengthy 4 hour surgery to 6 hours to an actual 10 hour surgery. Phrases like "a massive amount of stones" and "extremely large" kept being used. I will never truly be able to comprehend the level of intricacy that was needed to care for Sara today. But I am very grateful for the hands who performed with such precision. God has been woven throughout this entire process.

Boston - day 2 - surgery

Wake up time came early today, but thankfully we all went to bed early and the kids slept pretty soundly due to no nap in the afternoon. Rainy but not as bad as things seem to be back home, we got to the hospital quickly this morning. Rush hour is not too heavy at 5:45am.

Pre-op was busy because a lot of elective or non-urgent procedures are done during the holiday break for students. Sara got her surgical jammies on and quickly set her new zebra aside for a bear they gave her in the holding area.


The hospital socks are also not her color choice and even though they said "small," they were still a little big for her dainty feet. No complaints from her, though.

The anesthesiologist asked her the bear's name. She hadn't named it yet so on the spot it was dubbed "George." However, after a quick trip to X-ray for one fresh picture, the bear changed gender and became Hanna (my spelling - why put an "H" on the end, when Sara doesn't need one?). Sara then sampled various scents for her gas mask and settled on a blend of strawberry and watermelon. I (Shannon) got to put on a gown and mask, even a lunch lady hair cover, however unnecessary that is.

Even though the OR holding was very full, Adam and Mom got to come in and brought a balloon.


Hugs and kisses and consent form complete and off we went to the room with more computers and high tech gear than NASA during Apollo missions. They put the pulse ox monitor on her finger and started singing Rudolph the red nosed reindeer since it had a little red glow. Glad we're not paying for their vocal talent!

Then Sara started breathing her fruity fun mask and was out in about a minute. I gave her a kiss on the cheek and before I could say "goodnight Princess Cupcake", she was zonked on the table.

Breakfast time for the three of us. Adam got his first lessons in Ms. PacMan and Galaga.


Now we're just hanging out in the large but busy family waiting room. The nurse liaison said the first news from the room was that the setup was done and robotics getting started. We will get updates about every 90 minutes.

Second surgical update - it's taken me this long to get everything lined up, so in the meantime, another update came in that they are breaking up a big stone but there is no time estimate. Next update should be around 12:15pm. Early lunch for us now.

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..."

Traveling to Boston

Yesterday was full of excitement and many new experiences for the kids. With breakfast in the car, we were loaded up to leave for the Chicago airport by at 8am. Only 30 minutes late from Shannon's planned departure time...but we all know he was building that in, right?

At the airport, the kids quickly noticed we parked by the airplanes and they were even the airplanes we were going to be flying on. Of course it was loud so Adam came prepared with his built-in noise cancelling headphones.



We thought 2 1/2 hrs prior to flight time was plenty adequate to navigate the airport. Turns out that we should triple normal arrival time when with the kids. They weren't poky and actually behaved extremely well. We were just loaded down with luggage and many things took more time than expected. Even the bus ride to the airport took 20 minutes. Thankfully, we bypassed about an hour long wait in security - one of the benefits of traveling with kids. Downside? The confiscated one of my containers of hair product because it was over the volume limit and when he shook it, it was nearly full. There's $20 I won't get back!

At least the kids rode in style!



We had to eat a quick 15 minute lunch, which is no small task with them, and rush to the bathroom in order to board. Only 4 people got on behind us so the plane was already quite full. Thankfully people were very patient and we were able to find 2 groups of adjoining seats. Here is Sara all set to go with her new zebra Zig Zag! She says it has eyes like a Bush Baby...no, I can't make this stuff up!


No nap on the flight - too many things to look at, magazines to peruse, questions of when they were going to bring the snack and when she was going to get her apple juice. It went well but considering I was going on 4 hours of sleep the night before, I just wanted off the plane!

The kids thought it was really cool to look out the window and see the plane we just got off.



Shannon and I thought it was cool that the Boston Airport had rocking chairs for you to sit in to watch the planes and pass the time.


Both the kids fell asleep for a short bit on the ride to the hotel, which turned out to be a little longer than expected because we lost GPS signal in a tunnel and made a wrong exit. We ordered pizza to eat in the room and tried to tuck the kids in early. Even though we had gotten a suite with 2 rooms and a closing door, it was vacation, they were exhausted, and we were trying to get them to sleep in the same bed together, which they haven't done for 2 1/2 years. Perfect storm, right? After 2 hours we were finally successful. Actually, Shannon was successful. I had given up.


Adam thought it was pretty cool to look out the window and see all the traffic and buildings. Lots of construction, draw bridges, gigantic ships getting loaded with cranes on the bay.


One thing I can say about Boston? It is WAY different than home! Traffic congestion is a nightmare. Sirens going by all the time. Large, very neat historical buildings. Roads where you can make a 90 and 45 degree turn in both directions at the same intersection. 4 lanes of traffic going the same way, or at least we think it was four lanes - it was more like a wide black area with no striping and it's a free-for-all to figure it out!


I am definitely thankful that we are all together as a family. Shannon is a much better navigator and all-around sherpa!

Saturday, December 15, 2012

Surgery? Make that a double!

Adam had his follow up ultrasound yesterday. It had been 3 months since his initial ultrasound. It was the first time we had a male tech and Adam thought that was pretty cool. He even taught the kids a new word - bogus!

After the test we met with the urologist to get the results.

The ultrasound showed that the dilitation is worse and the thinning in Adam's right kidney, as a result, is also worse. There is a blockage somewhere in the area of where the kidney funnels and drains into the ureter. Surgery will be required. It will be similar to Sara's upcoming surgery as far as access and that it will be robotic. He would like to do it in two parts. First, a procedure under anesthesia to put in a stint that will open the area of the blockage and help it drain the urine to prevent further damage while we are waiting for the surgical schedule to be available. Then, a robotic surgery to remove the blockage.

Looking at his calendar on his smartphone he said "I can put the stint in on Monday if you would like." Knowing what our upcoming schedule looks like, I asked if we could wait until January. He quickly said no and offered me Dec. 28 as a second option. I agreed. The 2nd surgery will be scheduled after the stint is placed, probably at least February or maybe March.

Hydronephrosis is the clinical diagnosis. It's possible the thinning will improve but very unlikely that it will return to 100%.

Even as I type this I can't believe that both of my kids will be having surgery within a few months of each other. Adam and Sara, when you read this someday, I want you to know that even though mom and dad find this season of our life challenging, we are calm and confident that God is caring for our family. I haven't broken down crying, although a good cry is probably in order. I haven't spent hours asking why. I have had moments of disbelief but take things one day at a time, one decision at a time. Know that I love you both more than you can imagine and if I could prevent any of this, I would.