Tuesday, January 29, 2013

Brotherly love

Adam has had a few times of being so loving to Sara the past few days that it just melts my heart.

Sara still has 1 stitch that hasn't fallen out from her Boston surgery on Dec. 21. We keep putting a bandaid on it because it sticks out a little and rubs on her shirt if we don't. Every few days the bandaid starts falling off and we have to put a new one on. The problem is that the old bandaid hangs on by a corner and I have to pull it off, which tugs on her little tummy hairs. Two days ago was typical and Sara was extra dramatic--yelling and screaming that it was going to hurt. Adam came in the bathroom and put his hands on the side of Sara's face and told her "It's going to be okay, Sara, breathe with me."

Yesterday when Sara and I were getting ready to leave for the hospital, I asked Adam if he wanted to tell Sara bye, have a good surgery. He was walking out of their bedroom rubbing his hands and said, "Just a minute, I'm rubbing my sanitizer" because he had just gone to the bathroom. He finished up and gave Sara a big hug. Then he told her "I want to give you a kiss" and they both stood there for a long moment kissing before Adam told her "Bye."

I love, love, love it!

Saturday, January 26, 2013

A robot inside Adam

Adam had the last surgery in our family's crazy 4-surgery week. He had a few moments of being nervous about it because he walked every step with us on our Boston journey with Sara. I tried to make it fun and silly by telling him there was going to be a robot inside his tummy. It works really well for the kids in dealing with things but it also means that when we go places, they could start talking to a waitress they have never met before and say "I had a robot inside me to get rid of a blockage I have." You should see some of the looks I have gotten...and then the follow up looks when I tell her that he is right!

This time I was really struggling to find a sitter for Sara. My mom was not recovered well enough from surgery and the couple other options that were "usuals" were unavailable. A person from the twins' group finally came to mind the day before Adam's surgery. She has been to our house before with her little girl and Sara just adored them. She constantly comes to me and says "this is my baby named Clara and I'm the mommy named Christina." Thankfully, it worked out perfectly.

Sometimes it's hard to limit the kids' food on the day of surgery. This morning Adam enjoyed a fun dumper truck jello breakfast, complete with a full load of "rocks."


I got a phone call from the hospital again asking what time I would be there. Shannon met me there during his lunch hour but unfortunately, this time Adam and I were going it alone. Shannon had to teach the last day of a multi-day class that already had to be rescheduled once before.

Weighed, measured, pick a cool hat, find our way to the pre-op room. You know the drill, right? We got the exact same pre-op room for the 3rd time now! And the same nurse! Yellow this time...





No iPad so we headed to the playroom. Adam found some of his favorite things--Lightning Macqueen's of all different colors!



We ran into the nurse from Adam's 1st stent surgery who gave him a piggyback ride into the OR. It made me a little emotional to see her bend down to his level and be excited to see him. He remembered her, gave her a high five, and they chatted a while before hugging and saying goodbye. We really have met some great staff.



It was a long almost 2 hours of waiting for surgery to be over. I learned that waiting by myself is much harder than waiting with Shannon. They were finally done and the doctor said everything went as expected. The blockage was hiding behind the liver. He was able to open it without removing part of the ureter, which was great news.

Adam did pretty well in the first part of recovery and wasn't in too much pain. He was able to fall asleep once they gave him some pain medicine and then we were transferred to his room on the 5th floor. He had a great view of the Peoria skyline and the Lifeflight helicopter pad. At one point a helicopter took off straight up and he could see it thru his window before it turned and flew away.



Originally the plan was that Shannon would pick up Sara and my mom after he got off work and head down to the hospital to see Adam. On their way, I had to tell Shannon the hospital was not allowing any visitors under the age of 18 because of how bad the flu and other illnesses were in the area. Adam enjoyed an orange popsicle and then we were able to do a skype session with everyone at home. That helped Sara, who was really missing Adam.

The anesthesia was making Adam feel queasy off and on. This green bag became his new best friend in the hospital and for a while at home, too.


Overnight was probably worse than Sara's first night of being checked on in Boston. It seemed like someone was in there every hour doing something. I think meds and vitals could have been timed and coordinated much better than they were.

Our biggest goals for discharge were to be drinking lots of fluids, eating a little, and having a bowel movement. No poop, no home. His pain level was pretty good. What a difference between 11 hours of surgery and 2 hours. He was a little sore in the belly where his 4 ports were, battled with the upset tummy, and had a shoulder that was quite sore. The nurse said the air that they put in your body during surgery has to go somewhere and typically it settles into a pocket in a shoulder and can be pretty uncomfortable. Adam does awesome with breathing thru the pain. He would put his little forehead against mine and breathe out slow with me when he needed to.

We read books. We looked at a Ford Mustang magazine. We walked and took the wagon to the playroom. We ate popsicles. I must say the hospital food was pretty good, better than Boston. A volunteer stopped by and gave Adam a Towmater lego to put together and take home. We ate a snack.


Still no poop. I was beginning to think we were going to have to stay another night. He tried a few times but it hurt his belly too much to push. The nurse tried a suppository and couldn't get it in. After having a very emotional hour, we were finally successful. Shannon was going to drop me off clothes but didn't know what to do with Sara. He ended up sneaking her in Adam's room. Thankfully, no one said anything. Sara was really mopey all day long without him and she was so happy to see him so she could mother on him and feed him Teddy Grahams! Finally...a bowel movement and we were released!



Even when we got home Sara was playing doctor with him!



Friday night Adam slept in our bed, which was good for the number of times he woke up and needed medicine or just a snuggle in the middle of pain. Dealing with the catheter was the biggest nuisance. The doctor said *I* could take it out on Monday. Pass. I lined up a couple possible nurse friends from the twins' group I belong to.

Sunday afternoon Adam slept in his own bed for a nap. When he got up, I thought it was very strange that his catheter bag was completely empty but dismissed the thought. Shannon and I left for a NICU Family Advisory Board meeting. When we got back, his catheter bag was still empty. I knew something was definitely not right. I tried to examine if there was a problem. It seemed a little twisted at the top but nothing I did helped it flow again. Adam's belly hurt so I made him try to sit on the potty and he ended up peeing out the catheter all over. Shannon figured out there was quite a kink in the tubing and got it fixed. However, the catheter had shifted slightly and was causing Adam some discomfort. One of my PMOT friends was willing to come over after her kids were tucked in bed and remove the catheter. It was 8pm Sunday night by then and shouldn't cause a problem coming out just a little early. It didn't take Adam long to forget about the pain of getting the tape off and pulling the catheter out and realize he enjoyed the freedom much more.

Recovery last week went very well. Adam was able to get up and down from the couch, his bed, and dining room chair pretty quickly. Bouts of upset tummy come and go. He knows where his stent is and when it causes him pain. There was one day he did way too much running thru the house with Sara and then was in a lot of pain that night. We listened to him complain in a restaurant for an hour that he thought he was going to be sick. We have learned that is usually a side-symptom of his stent pain. Sara has had blood in her urine since then, 3 days ago. I'm getting a little worried about it. The doctor would say it's no big deal and is common when there is increased activity which causes the stents to rub. However, she has not had blood in her urine at all for probably 4 weeks.

The nurse said Adam's ports are healing well. No baths for another week. No pools for a few weeks. Final surgery for the removal of the stent is February 28.

The hardest part of this procedure for me was seeing his belly. Sara's belly was much more distended from her bowels waking up so slow. But she had white steri-strips and bandaids covering her incision ports. You can imagine my surprise the first time the nurse lifted Adam's shirt and the only thing covering Adam's incisions was some clear tape. I am used to it now. Mostly.


Wednesday, January 23, 2013

We just don't know

We met with the nephrologist a week ago, just a few days after Sara's left lithotripsy. He reviewed all of her previous labs with me. Everyone seems to agree that Sara's stones are struvite stones, which are made of calcium phosphate and are formed from infections. Dr. Gordillo does not see anything else out of the ordinary in her labs that would point to a different type of stone. They don't typically recur that fast so it's rare but not impossible.

She does not have a lot of salt in her urine and there is no calcium oxilate, which would indicate a different type of stone. Her citrate levels are a little low, which help prevent stones. We can increase her potassium intake for now with foods like potatoes, tomatoes, cheese, bananas, and orange juice.

We discussed the possibility of moving up her reflux surgery. Since the stones were forming on the left and that is where her reflux is, maybe that is connected.

He also ordered another 24 hour urine test to see if her urine output has changed at all since the previous one.

The missing piece of the puzzle is the lab results from the stones that were removed in Boston. I have emailed the surgeon and the results are still pending. Unfortunately, the fragments were broken up into such small pieces that the lab is having a hard time running tests on them.

Yesterday Sara had another x-ray and visit with the urologist. Another stone is present on the right now. It was a very faint shadow last week that he didn't want to mention but it's obviously evident now. He has never seen this in a child and he isn't sure what to do. We are on his mind every day to help figure this out. Dr. Rhee stepped out and called the Boston surgeon to get his input. Originally she was supposed to get shock lithotripsy on the right this Monday and her left stent was supposed to be removed. They have decided to move forward with the lithotripsy but keep the stent in for now. There is a 3 month limit on the stents being in her body so we still have some time.

The other concern Dr. Rhee has is whether she will pass the amount of stone fragments the lithotripsy created. The fragments are small but there are a massive amount and they have spread throughout her kidney. I am supposed to start straining her urine to see if she is passing any.

I have never had a moment of asking why all of this is happening. I just haven't. I try to wake up and keep going each day as best I can. To be honest, I'm getting exhausted. But I know full well that I am Sara's best advocate. Absolutely no one will fight to get answers for her more than I will. I have generated a list of questions to ask the nephrologist and emailed that tonight. I can't sit by and just wait. Every day is crucial. I need to push for a step, any step, in some kind of direction.

Sara's left lithotripsy

We have been pretty cautious talking about Sara's kidney stones in front of her since coming home from Boston. The entire experience was pretty traumatic and I was trying to figure out how to tell her that they didn't get all of the stones. I thought if I talked about it in any way she would think she was going to get another Boston experience. So I waited. And waited. I couldn't just show up at the hospital either and surprise her with it. Finally the day before we were supposed to go I tried to discuss it very light-heartedly.

"Sara, we have to go back to the hospital tomorrow to work on your kidney stones a little more."
"No, I don't want to go."
"It's okay, you are just going to lay on a table and they will jiggle you a little bit like this..." and I put my hands on her mid section and shook her a little. She giggled and we left it at that.

The next day a friend came to watch Adam and brought her 4 year old little girl. Sara was upset that she didn't get to play, too, and kept saying that she didn't want to go to the hospital. I gave her a hug, looked in her eyes, and said "Honey, I promise, it won't be anything like Boston. We will do it together." I took her hand and we walked out to the car.


I learned the week before with Adam that 2 hours early really wasn't necessary. They must have put a note on my record or something because I got a phone call mid-morning asking what time I would be there!

Next stop was dropping Grandma Marilynn at the hospital across the street from Sara's for her arm surgery. Shannon had generously offered to be the family member with my mom for her surgery so I could be with Sara. A very difficult decision for me to choose being with my daughter or my mother.

We got there 90 minutes early and did our usual annoying registration process. Seriously. Why do I have to sign the same document every single time? Do you know how many of those I have signed? And can't they make a note on my account that we don't have insurance so they don't ask me every single time. It's so annoying. Then they sent us for an x-ray...to the wrong floor. 2 weeks in a row we were sent to the wrong place. I thought it was odd they wanted an x-ray since the post-surgery x-ray was forwarded from Boston to avoid taking another one but dismissed the thought.

Back to the ground floor to check in for surgery. It's starting to become a familiar place with familiar faces. Hardly no waiting before going back for pre-op. Weight...check. Height...check. Fancy surgery hat chosen...check. We actually went to the same holding room as the week before with Adam. Lots of questions and then change into surgery wardrobe - yellow this time!



With some time to kill, we headed to the play room to pass some time.



And we got a visit from Child Life who gave Sara a really neat dog in a box with a book that talks about the hospital experience.



She chose a wagon ride to go back to the operating room instead of a piggy back ride.


Thankfully I didn't have even close to an 11 hour wait before seeing my baby girl again! She was a little groggy and totally sweaty with 3 blankets on. Level 1 recovery didn't last long before they sent us to Level 2 and we had a chance to snuggle together over apple juice and Teddy Grahams.



The recovery from lithotripsy has been a cake walk compared to Boston. I didn't even fill the prescription for Tylenol with codeine.

The procedure went well and the doctor was able to break up the remaining stone. But the doctor also had some bad news to deliver. Remember that x-ray that I thought was odd? The doctor tried to cancel it because the system schedules it automatically with a lithotripsy but he couldn't get to it in time. It turns out that was a blessing because it revealed 2 more stones had already formed on the left since Boston surgery 3 weeks earlier. He had called the nephrologist already and told him he needed to get us in immediately to find out why this is happening.

Sunday, January 20, 2013

Make that 4 surgeries in a week

Adam had his stent placement on Monday, Jan. 7.

I took my mom back to the orthopaedic doctor the next day to x-ray the 2 broken bones in her arm. We learned that during the healing process, her bone had shifted and she needed surgery in the next week to insert a plate or it would limit her mobility and arthritis would set in. In the next week turned out to be either Thursday or the following Monday. Sara was already scheduled for surgery Monday so after much emotional coaxing, I convinced Mom of Thursday. Then began the entire list of things she had to accomplish before then. A doctor to clear her physically, lab work, an EKG, and a chest x-ray. It took me 7 phone calls to find a doctor who would meet with her and review her information to clear her. We headed to the hospital Tuesday evening to do all the labs, EXG, and x-ray, then met with a doctor Wednesday morning who signed the paper to clear her.

Then Thursday came. Somehow the x-ray was sent to the wrong office and that initiated resending all the information to the previous day's doctor. Except he was now out of the country and a different doctor glanced at it and stopped surgery plans immediately, 1 hr before walking out the door. Her EKG came back abnormal and her chest x-ray came back abnormal. Now we scrambled to make appointments with a heart doctor for further tests and get a chest CT scan before our surgery window closed. The heart doctor was not concerned about the type of abnormality but ordered an echo to be safe because the x-ray showed her heart was enlarged. He cleared her for surgery and it was rescheduled for Monday. The echo showed some tissue was enlarged in a ventricle but the heart was pumping fine so no follow up was needed.We are stilling waiting on the news about the chest CT. Mom's surgery went well. It is still quite painful at times and because it is only in a splint, she is very limited with what she can do.

Then came news about Grandpa George. He had been experiencing some shortness of breath and initiated going to a doctor. Some tests were coming back normal but then he did a type of breathing stress test which showed problems. They scheduled him for an angioplasty on Thursday of the week following and would have a heart team standing by in case more was needed once they got in there. The angioplasty revealed 1 out of 3 arteries was completely blocked but the pressure in the remaining was fine so they can treat with medicine.

So we had...
Sara's robotic kidney stone surgery in Boston on Dec. 21
Adam's right stent placement surgery on Jan. 7
My mom's arm surgery on Jan. 14
Sara's left shock lithotripsy on Jan. 14
Adam's robotic surgery for his uretero-pelvic blockage on Jan. 17
Grandpa George's angioplasty on Jan. 17
Sara's right shock lithotripsy on Jan. 28 (and hopefully left stent removal)
One more surgery pending for Sara for her right stent removal
One more surgery pending for Adam for his right stent removal

No wonder I'm exhausted.

Adam's stent

Adam was supposed to get the stent in his right ureter to improve urine drainage from his blockage on December 28. However, we postponed because of things in Boston being delayed. I can only manage 1 child screaming in pain at a time if I have the choice.

We rescheduled the procedure for Monday, January 7. For some reason they make you arrive at the hospital 2 hours prior to a surgical procedure. We were obedient and followed the rules. At 2pm we registered and headed to the surgical waiting area. They had a cool treasure map to talk Adam thru all the steps that he would be experiencing.


We finally went back to start pre-op. He was weighed and measured. He picked a cool hat. Then we were placed in a private room to take vitals and discuss all the other details.

At 3:15pm we were totally done with the pre-op process, dressed, and ready for surgery, which wasn't scheduled until 4.


Only to discover that the doctor was currently in with a surgery that would take at least 45 more minutes, then there was another patient, then Adam. Thank goodness for iPads!


Finally around 5:30 they took him for surgery. Thank goodness. He was really starting to complain he was hungry and I don't think Shannon could have shown him any more pictures from Cars movies!

Surgery took about 40 minutes. It would have been shorter but the first stent they tried was too large and they had to track down a different one somewhere in the hospital. Since it was so late, we got to break the rules and both of us got to see him in the first phase of recovery. He was doing pretty well tolerating the pain so they moved us on to the 2nd stage of recovery.


Then he wasn't so good. Adam's pain increased and we had to give him IV pain meds since they gave him Tylenol during surgery and that put him at his limit. She would give him some meds, he would relax and sleep. He would wake up in pain, she would give him some meds, he would relax and sleep. After it happened a third time, we said enough, we are just chasing our tails here and this is just delaying getting him home. The nurse was frustrated that they give Tylenol in the OR because it limits them post-surgery. We just wanted to get him home and by then we could give him some Tylenol with Codeine and put him to bed.

He had gone to the bathroom once at the hospital. We had him loaded in his car seat and he had to go again. Off I went carrying him (gently) all the way to the bathroom. Thankfully, Shannon met us on the way out and carried him back to the car.

Once we got home he was happy to see some visitors had stopped by and decorated his bedroom door for him. This is about all he felt like doing. He snuggled in bed with us the first couple nights so we could comfort him when he would wake in pain or have to go to the bathroom.



Robotic surgery was scheduled for February 21 so we could get past Sara's lithotripsy procedures. After 48 hours of still shaking and screaming in pain when he went to the bathroom, I had him pee in a bucket to see just how much blood was mixed in the urine. My stomach turned when it was the color of a deep burgundy wine. The nurse had told me the pain should have subsided by then and we should call if there is that much blood. Dr. Rhee said the nurse was completely wrong. He may have that much pain the entire time he has the stent - 6 weeks to surgery and 4-6 weeks to heal after. And that much blood is no big deal.

I felt absolutely sick that I was going to have to watch Adam in that much pain for that long. Why didn't someone tell us? It's so frustrating to keep having these instances where we could have known more. I shouldn't have to teach my kids at the age of 3 that sometimes God takes away the pain and sometimes he makes us brave to handle it.

We started a new regime of pain medication, gave him some of Sara's oxybutyin for bladder spasms, and moved the surgery date up to January 17. Thankfully, after a few days and a whole lotta praying for Adam's penis, it improved to where it was tolerable!

Trying to get home

We finally made it back to the hotel in time for dinner. Shannon ran out to get food while I got Sara comfortable and started packing suitcases. Her tummy was still so distended that I had to completely let the buttons out on her jeans to even get them closed!


Sara was mad she couldn't just eat anything she wanted. We knew her tummy wasn't ready for that. Shannon left for a supply run and to buy another bag or suitcase to bring all our new stuffed animals home. Then things headed downhill. Sara started saying her tummy hurt and that she was going to be sick. Historically, Sara knows exactly how she feels and we should pay attention. She started throwing up all over herself and the bed. I scrambled figuring out what to do with only Adam to help me. I yelled for him to get off the bed and into the bathroom for a towel. He knew something was going on and listened very well. I called Shannon and told him to get back quickly and set the phone down while swooping up Sara to get her in the bathroom. Next thing I know Adam picked up my phone and somehow dialed Grandma Sue. He was telling her the whole story "Grandma, Sara just threw up and it was green and Dad's not here..."

"Adam put the phone down and come in here to help me! Climb up on the stool and get a washcloth wet."

As Adam followed my instructions, I heard "hello? hello?!" He had set the phone down on the bathroom floor and poor Grandma Sue didn't know what was happening! Thankfully she didn't panic. She may have if she knew that throwing up stomach bile may have meant we were taking Sara back to the Boston ER.

The rest of the night we settled into a routine of Shannon setting alarms every 4 hours to wake Sara and I for her next round of medication. The morning passed quickly between breakfast, packing, and washing Sara's hair for the first time in a week. We headed to return the rental car. Adam really enjoyed watching all the buses.


I did not feel the same excitement about the bus. It was a rainy, dreary morning. Shannon loaded all our luggage, which was now 2 large suitcases, 1 medium suitcase for a carry on, 1 new large duffle on wheels, 2 kids backpacks, 1 adult backpack loaded to a 30lb capacity, and 2 car seats. Sara was not able to walk long distances so we were carrying her everywhere and the only way she was comfortable was in a slightly reclined seated position in front of me. I boarded the bus holding Sara and jumped up from my seat as quickly as I sat. The seat was soaking wet and my pants were now wet from my butt to the back of my calves thru to every layer I had on. By now the driver had already pulled away. I was trying to balance myself and Sara on a moving bus while yelling for him to stop. Who knows why the seat was soaking wet but he knew about it and didn't show much compassion that he forgot to tell me.

Once at the airport, Shannon unloaded all the luggage to the curb while I stood with Adam and held Sara. He asked me if it looked like we had everything. I took inventory...2 large suitcases, 1 medium suitcase, 1 new large duffle on wheels, 2 kids backpacks, and 2 car seats. Yep! The bus pulled away and Shannon's eyes lit up--my backpack! I didn't realize it wasn't there because I was so used to him wearing it everywhere. I shouted RUN and he took off waving his hands over his head to flag the driver. Adam became upset when he understood what was happening. About in tears, he screamed "Go Dad Goooo" over and over as we saw the bus getting further away. Finally after over a block he pulled over and Shannon retrieved the backpack. Adam is such an encourager and Shannon could hear him cheering!

The day just headed downhill from there. We grabbed lunch and battled with Sara's pain level. Her bowels were still trying to wake up. She was suffering from bladder spasms because of the stents. And she was hungry but her stomach couldn't handle much without feeling nauseous. I was so happy she finally got some relief after falling asleep. Unfortunately with the weather, our flight was delayed 3 1/2 hours until 8:30pm. It was going to be a long afternoon and evening.

Adam was also exhausted but I could not get him to lay down. We strapped him in his car seat attached to the luggage carrier and I walked the airport until he gave up.

After being at the airport from 1-7, we finally requested wheelchair assistance to get us thru security. Adam kept wanting to push Sara and when we would stop, he would put on both the brakes. At one point when Adam was hanging onto the wheelchair, I looked over and Sara put her little hand on top of Adam's and started patting him. It was so cute.


Once on the plane, we saw that most everyone else who intended to join us on that flight changed their plans and left about 30 people on board. We spent the next hour seatbelted in our seats watching boxes being unloaded and reloaded from the belly of the plane, as well as de-icing trucks. Adam was fascinated. Shannon wanted to snooze. Sara screamed "Ow, ow, ow, Mommy Owww". Finally in the air, I took off the seatbelt and laid Sara across a few seats. Then she threw up. Thankfully I saw it coming and was able to lean her over so she didn't throw up on herself or me. The flight attendants were nice enough to let us land with her still laying down.

The worst thing about Chicago was making it thru the airport with a wheelchair and all of our luggage. Sara wanted to sit in my lap in the wheelchair so Shannon had to get creative about stacking all the bags on a luggage carrier. That was fine until Shannon took the shuttle to get the car and the woman helping with the wheelchair told me I would have to walk all our stuff out to the car as Shannon would not be able to park and come in. By the time I got it all stacked, it was as tall as I was. Then we moved very slowly for Sara to walk. Needless to say, it was so nice to finally get home.

Sara slept in bed with us for a few days until we learned the right combination of medication to keep her pain in control. She had moments off and on of screaming in pain when her bladder would spasm or there was gas in her, and then she would throw up off and on. We also spent 9 days figuring out why she was running a fever. The on-call urologist finally concluded a yeast infection when I told her Sara had white spots under her tongue. We weaned off as many medications as we could since she was absolutely refusing to take anything, and celebrated a few good days before the next phase of surgeries.

Wednesday, January 16, 2013

Out of the mouths...

Adam was up until 11 last night. By mid-morning he was already showing signs of crankiness and being tired. Great. And it was going to be a no nap day because of a doctor appointment for Sara. Both kids were climbing in their car seats when Adam started whining again. I don't even remember what it was about.

Sara said, "Oh, God. Another meltdown?"

Thanks, baby girl, I totally needed that moment of laughter!

Tuesday, January 15, 2013

Discharged

Much has happened...let me try to catch you up!

I last posted on Christmas Day when Sara was having improvements. Overnight it was probably the worst night we had so far. She was in a terrible amount of pain and even I was struggling to get her back to calm in the midst of it. By the morning, the nurse felt like something else may be going on and pushed for the doctors to do an x-ray. The medications assigned were no longer managing her pain. I was relieved that we were trying something.

Shannon and Adam came mid-morning. Of course Adam was being himself, figuring out quickly how the bed works and dropping the sides faster than I could and trying to lift Sara's spirits.


Fifteen minutes later and she was "unstuck" and ready to eat some Cheerios. In fact, she ate nearly the whole container, which was the most she had eaten since she arrived 5 days earlier.



11am and we encouraged another long walk down to the nurse's station. You can see how happy she was about it.



By now it's been a few hours and we were still waiting for someone to come take her for an x-ray. To pass the time, we ventured down to the play room for a change of scenery. Something amazing happened and Sara came to life!



She found a little grocery cart and a stuffed animal. Loading her new-found "baby" into the cart, her mommy instincts kicked in and she was happy as could be. Shannon could hardly keep up with her with the IV pole. Once she started to tire, we headed back to the room for some more snacks. Adam got more smiles with a game of peek. We let the nurses know that we didn't think the x-ray was necessary now.

Early afternoon, the surgeon Dr. Nguyen, stopped by and said "I can discharge you to your hotel and you can fly home tonight or you can stay another day and be discharged to the airport tomorrow." I looked at him in shock. Less than 12 hours earlier she was screaming in pain at every step she took and now he wants to release us. I know he felt bad that we were so far from home around the holidays. Part of me really questioned whether she was ready. Another part knew that we had just pulled her last IV because the vein blew and I didn't want her to go thru inserting another if we didn't have to.

Shannon and I spent time talking thru it while the kids napped. The IV helped in the decision, as well as the fact that we wanted some time caring for her away from the hospital before we completely left the city.

We began packing our bags and bags and bags. December 26 would be our last day at Boston Children's Hospital. Very quickly some of our "normal" came back. I scrambled to pack while Shannon went to the hospital pharmacy to fill prescriptions. Sara bickered at Adam because he kept pestering her and climbing in her wagon. The nurse was just cracking up as she came in and out with discharge instructions.


All packed but Sara was really not in the mood for a smile.


We finally coaxed one out of her as reality set in that we would be going home soon!