BACK TO THE HOSPITAL WE GO

On Monday, July 9, 2012 Sydney, Jack and I are playing a game on the floor when Syd says she needs to go lie down on the couch.  She rests for a minute and says she has a pain in her right side.  I check it out and the pain is no where near her surgery site.  She begins to really start complaining about the pain and I think maybe she has pulled a muscle from starting to sit and stand by herself the previous weekend.  We put ice on it, then heat.  Anything to try and alleviate the pain.  She also says that she feels like she needs to pee but she doesn't really have to go.  She is in a lot of pain at this point and we decide she will take some Tylenol and see if it helps with the pain.  I give her the medicine and she immediately throws it up.  This begins a series of vomiting.  Now I'm on the phone to the surgeons office and her primary.  What's going on and where should I take her?  It is the end of the work day by now.  I don't hear back from anyone right away so I put her in the car and prepare to take her to urgent care.  She is begging me at this point to take her anywhere.  Just make it stop.  Brian pulls up as we are leaving and jumps in the car with us.  Her doctor's office calls as we are in route and tells us to take her to the E.R.  Brian and I debate whether to go to Children's Hospital or Grossmont.  Sydney does not want to go all the way to Children's so we decide on Grossmont.  Brian and Jack drop us off in the front and we head in.  The waiting room is FULL.  Sydney sees this and says "forget it".  She does not want to sit there for hours and just wants to go back home.  I tell her we have to get her checked out because the vomiting is making me nervous.  She and I go to the front and while I am signing her in she throws up in my hand and moans in pain.  They take her back immediately to triage and she is crying and saying she needs to lie down.  Once they work her up a nurse walks by and comments on how terrible she looks and says she will get her a bed right away.  She did look pretty bad considering she already looked frail and weak from the surgery and this made it that much worse.  We were taken to a room and they put in an I.V. and started her on fluids to get her hydrated.  We waited to see the doctor while Sydney kept asking when they would give her something to take the pain away.  They sent her to get an x-ray to help determine what was going on.  The doctor came in and said he thought she might have a kidney stone based on her symptoms.  They are rare in children but not unheard of.  He prescribed a pain killer for the nurse to give Syd for the pain.  By this time her pain had subsided quite a bit.  They were prepared to give her a narcotic but she decided she just wanted Tylenol because she was not thrilled with the idea of pain meds again.  They gave her a dose of Tylenol and it seemed to succeed in getting rid of any lingering pain.

She had an ultrasound of her kidneys but they could not see any stones.  During this time she continued to vomit despite being given anti-nausea medication.  Around 10:00 they told us that they were going to admit her and transfer us to Children's hospital.  They needed to keep her hydrated and stop the vomiting before they would release her.

Jack had come to the E.R. with us and stayed until about 8:00 when my mom came and picked him up.  He was bored and hungry.  I called to update them when we found out Syd was being admitted and he wanted to come back.  He was crying and upset and just wanted to be back at the hospital where he could know what was going on.  So my mom brought him back so he could be with us.  He and Brian went home around 11:00 because Brian had to go to work in the morning and I was going to ride in the ambulance with Syd.

 
The paramedics came and got us at the hospital around 11:30 and took us to Children's.  They were waiting for us and had a room all ready for Sydney.  The nurse got her set up and a doctor came in and asked some questions.  Around 1:30 a.m. it got quiet and we tried to get some sleep.  In the morning, Brian dropped Jack off on his way to work and the three of us hung out in the room.  They didn't do much else to Syd except take one more set of x-rays to try and see a stone.  They couldn't .  They never collected one either.  Brian came back around lunchtime.  Sydney's stomach had settled down and she was able to eat and drink a bit.  They ended up releasing us in the late afternoon.  They never were able to tell us if she definitely had a kidney stone or not.  It's very possible that she passed it when she was at home or in the E.R. in so much pain.  We were glad to be leaving the hospital (once again).

When we returned home Sydney was understandably worried for a few days that the pain would return.  It slowed her down a bit and whatever appetite she had regained since the surgery was gone.  She was down nine pounds since the surgery.  That is a lot on her little frame.  It took five days or so for her to trust that the pain was gone for good.  It has not returned and she has had no more problems.  We're speculating that the kidney stone (if there was one) was caused by her inactivity as well as not being as hydrated as she normally is.  Now that she is eating and drinking as well as moving around regularly we are hopeful there will be no more.  That's enough excitement for one summer!

THE FIRST THREE WEEKS HOME

The first couple weeks of being home after the surgery were a little rough.  We decided that Sydney and I would camp out in our family room at night so that she could sleep on the couch and I would be near by on the inflatable bed. Neither one of us got much sleep during that time because she had a difficult time getting comfortable.  She was still unable to move by herself and needed me to help every time.  There was a lot of switching from one side to the other and trying anything to get in a comfortable position.  The first week or two it was like having a newborn in the house.  She needed us to do everything for her and she didn't sleep at night!

During the day she wasn't any more comfortable but there was more activity to keep her distracted.  Friends and family continued to stop by and we went on a lot of car rides just for a change of scenery.  We did have a few outings early on that surprised me.  She wanted to go to Subway eight days after surgery so she got dressed and we went.  Considering a few days prior to this she was barely awake from all of the medication, I was impressed and encouraged.

We also stopped by a friends house during one of our car rides and she got out and talked with her friend while sitting and lying on their couch.  One thing that made Brian and I laugh was one night, early on, Jack went to the movies with a friend.  While he was gone Brian, Sydney and I were watching a movie. Syd and I were lying on the inflatable bed that is really low to the ground.  When Jack got home he, Brian, and I were standing in our garage talking to our friend that took him to the movies.  We were only out there for three minutes or so and all of the sudden the door from the house opens and Sydney is standing there.  Up to this point, she had been unable and afraid to sit up on her own or get to a standing position from the couch.  Somehow she managed to sit up and stand all the way from practically down on the ground.  Brian and I just looked at each other because that is so classic Sydney.  If she thinks she is missing out on something she will do whatever it takes to get herself there.  I knew then that her social and determined personality and need to be going at all times would serve her well in her recovery.  She definitely doesn't want to miss more than she has to.

When they sent us home she was taking a narcotic painkiller and some anti-nausea medication to ease her stomach.  She still was not eating much at all.  Something would sound good to her and then she would only take a bite or two and be done.  She did not like taking the narcotic because she was having some negative side-effects.  On one hand, it was helping to dull her pain but on the other it was making her feel worse.  One day she decided she didn't want to take it any more.  This was only about two days after we got home.  I was concerned about this because I wanted to stay on top of the pain and not let it get out of control.  I consulted with nurse Amy and she said that it's not common for people to get off the meds that early but we have to go by her pain level and tolerance.  That day she switched to Tylenol.  That night was rough.  She was up most of the night and while not in a tremendous amount of pain she was uncomfortable enough to keep her (and me) up all night.  She decided to stick with the narcotic a little while longer.  After another week she was done for good and took Tylenol for a couple days and then nothing.  By the time we had been home for two weeks she was off of everything.

Something that made me feel very good is when Sydney said to me out of the blue, "Mom, when I think back about everything I don't really have any regrets except all of the worrying I did before the surgery".  She had just given me the greatest gift and she didn't even know it.  The fact that she felt this way even while she was still in the midst of pain and recovery reassured me that we had made the right decision for her. 

After being home for about a week and a half she started to venture out a little more.  At her two week check-up she was still moving very slow but she got the okay to go in the pool. 

 
So over the fourth of July week she did some swimming which was great for her.  She still got worn out very easily and spent a lot of her time at home lying on the couch or in her bed.  She was starting to push herself more while we were out and she even went to a couple of Little League all-star games to cheer on friends.  She sat on the hard bleachers the whole time and didn't want to leave. 

 
The weekend of July 7th she started to get to a sitting position by herself.  Until then she would need to have one of us help her to sit up when she was lying down.  Now she was sitting up by herself which was major progress.  She was no longer dependent on anyone to get off of the couch.  We were on our way!  And then...back to the hospital we go.

DAY FOUR/FIVE. WE'RE GOING HOME!

Monday, June 18, 2012

This morning Sydney says she wishes that we could snuggle together and I tell her we can.  I crawl in to bed with her and lay there for a while.  We try to take a picture of ourselves but it is still very early in the morning and too dark.  Dr. Fornari comes in during this time and says maybe she can go home later today.  She says she doesn't want to and he tells her we'll wait and see.  I try to reassure her that we will be okay when we get home but she feels more comfortable with the nurses near by.  I completely understand that but I don't think one more day will make her any less afraid.  Sydney is more awake than she has been since the surgery.  She doesn't sleep much at all and wants to get up and move a bit.  She and I go for an early morning stroll and I push her in the wheelchair out in to the brisk morning air.  We go to McDonald's and I get some coffee and she gets something else that she inevitably won't eat but sounds good to her right then.  Brian and Jack arrive and while Brian gets breakfast for us, Jack and I wheel Sydney to the classroom on our floor.  She sits at the computer for a few minutes and plays a game.  We're not there long but it feels good to do something outside of the room we've been living in.

A Resident comes in and removes the large bandage on Sydney's back.  This hurts and bit and she is glad when it is over.  He puts a much smaller bandage on that will remain until we have our first office appointment next Tuesday.

Later in the morning my mom, Bryan, Kim and Maddie come to see Syd.  Brian and Jack leave for Jack's piano lesson.  Maddie brought things to wash Syd's face and clean and brush her hair.  Sydney appreciates it because she hasn't felt like having her hair brushed since the surgery.

When her make-over is complete everyone but me goes down to McDonald's to get some lunch.  They take Syd in the wheelchair.  Eventually Dr. Newton and Dr. Fornari come in to see how she is doing.  Dr. Newton says she can go home today and she tells him she isn't ready.  I tell Dr. Newton that she is afraid to go home but that I think we are ready and can handle it.  We haven't seen the nurse much today at all because we have been doing most things ourselves.  I don't see a reason to stay another night when we can do the same thing at home.  He seems to think as long as I am not afraid and feel confident caring for her at home then we are ready to go.  He says we can leave later today.  The nurse comes in and says she will start the paperwork and get us the prescriptions we need and the discharge instructions.  We are at the hospital for most of the day and finally at 5:00 p.m. or so we are on our way.  Even though we could not have asked for better care during our stay, it feels good to be going home.  All of the nurses who cared for Sydney during our time at the hospital were so patient with her.  I really appreciate that.  We say goodbye to our room.

 
And we make that final walk down the hall.

When we get home Gracie cannot wait to see Sydney but quickly realizes that she is not quite herself.  She amazingly becomes very calm around Syd and just lays next to her all the time.  They definitely missed each other.

And at this moment, all is right with the world.

DAY THREE/FOUR

Sunday, June 17, 2012

Today is Father's Day. Sydney is definitely more awake than yesterday. Brian and Jack come this morning and bring the gifts we got for Brian before we came to the hospital. 

Casey, Kenny and Leah come for a visit in the late morning. While they are here our neighbors Jeff, Katrin and Jackson come for a visit as well. Sydney is awake most of the time and talking a bit.

After the neighbors leave she asks to get up and walk.  This is the first time she has asked to get out of bed.  The nurse comes in to help and Syd walks out in to the hall and comes back in to the room. Jack, Kenny and Leah are all following behind her like little ducklings.  This is the farthest she has walked at this point.  Casey leaves and takes Jack with them so he can hang out with Kenny for a while.

 
Later in the day they stop the continuous morphine drip and give her oral medicine every four hours.  She needs to take an anti-nausea medication as well because the meds make her sick.  She can't take a pill so she must take the liquid which tastes pretty horrible and there is a lot of it.  They remove the Foley and eventually the the bag with intravenous fluids. Now she no longer has anything connected to her.  She gets up and goes to the bathroom when she needs to. This means she is moving around more and getting up and down which is a good thing.  She sits in the chair for five minutes or so.  Kim, Maddie and Kyle come by for a visit.  In the afternoon she wants to get out so we put on a pair of her own pajamas and Brian, Jack and I take her outside in a wheelchair.  She and I feel fresh air for the first time in several days and it feels great. 

She eats a little more today but not much. A couple bites of a McFlurry from McDonalds, a few bites of pasta with butter and the usual other things. At night she eats one chicken nugget and a few fries. She tries to go to sleep but can't really get comfortable. Her stomach has cramps and the nurse says this is normal. The stomach is the last to wake up so it can hurt a bit. She says the more Syd gets up and moves around the better she will start to feel.  She can't sleep so she and I go out in the hall for a walk.  I push her in the wheelchair and we cover the entire floor.  This seems to calm her and wear her out a bit so when she gets back in bed she is able to go to sleep quite easily.  There is talk that we may go home tomorrow!

DAY TWO/THREE

Saturday, June 16, 2012

Sydney was up more last night than the past two nights. She is starting to wake up more now and is feeling more uncomfortable. She didn't have a bad night she just would wake up and want the nurse (Katie) to come in and adjust her position.  By 11:50 a.m. she has already gotten up and walked to a chair and sat down. She is eating some Saltine crackers, apple sauce and a Popsicle.  She is also drinking some water and Sierra Mist.  Today is the big piano recital of the year and unfortunately Sydney will be missing it.  Jack brought his clothes to the hospital and left from here to go to the recital. 

Laurie came by this afternoon and brought a balloon.

John and Chris stopped by and stayed for a while. Sydney slept through most of it but woke up to say hello. After they left I read my book until Brian, Jack, my mom and Bryan returned from the recital. They brought lunch. Melanie and Sierra stopped by and brought a little bear and balloon.

 
Later, Virginia came by to visit and brought Syd a goodie bag with activities to do when she feels better.

Syd was pretty restless most of the day. She was not comfortable and constantly wanted to switch positions. When the doctor on rounds came in he said that we could go ahead and move her as often as she wanted. Before they had been making her lay in one place for at least one and one half hour.  I think this was primarily to keep us from calling the nurse every five minutes!  She continued to take bites of food and drink some throughout the day. She was still hardly eating anything at all.  After everyone but the four of us were gone the nurses helped her stand up and walk to the chair again. She sat a couple of minutes and looked stronger this time. She was anxious to get back in bed and when the nurses asked her to walk around to the other side, which was further, she was walking faster than the nurse!  She was in a rush to get back in to bed. We ordered some macaroni and cheese and peach yogurt for her. She had a few bites and that is it. She wanted to drink ice water which tasted really good. She continued to want to be moved but never seemed to be in a lot of pain, just uncomfortable and restless.  She has yet to want to watch television or do much of anything but rest.

DAY ONE/TWO

Friday, June 15, 2012

Last night was a good night. The nurse only checked Sydney's vitals every four hours so there was not as much disruption. They still came in and turned her every two hours but that only takes a few minutes. I got more sleep which I think was from sheer exhaustion. We have a new nurse today, Kelly. She had a spinal fusion when she was younger so she knows what Sydney is going through. Sydney is much more awake today. The tube in her throat is bothering her and she says it hurts to talk. Dr. Fornari was in this morning and took out the drainage tube from her incision. They turned off the suction from her stomach tube. If she goes a few hours without getting nauseous they will remove the tube completely. Dr. Fornari says the goals for today are to remove the tube, get something in her stomach and have her stand and take a few steps. That sounds like a lot to me but they want to push her a bit so she can start moving around.  Mrs. Keyte, her piano teacher, came by around 9:00 a.m. to see Syd. 

She is sleeping the majority of the time but wakes up more often than yesterday.  They took the tube out!  That was a big relief for her.  At 12:30 Sydney got up, stood and then took a few steps to a chair. She sat in the chair while the nurse changed her bed. They gave her an anti-anxiety drug (Ativan) about 30 minutes before she walked.  She was naturally afraid that it was going to hurt. Once she did it she said it wasn't as bad as she had thought it would be.

 
Caroline, Jordan and Garrett came by for a visit around 1:00.  Syd was pretty wiped out from the Ativan and from getting up so she wasn't very awake while they were here.

After they left my Mom and Bryan came and brought us lunch. We're now officially in to day two of post op.  Brad, Rene, Jake and Jordan came by for a visit. Syd was still tired but was able to say hello.

 
After they left we ate lunch and then Kim and Maddie came. While they were here Tara came too. We all visited for a while and Syd slept.  I think the Ativan really relaxed her and made her very sleepy.

 
Tara left and nurse Amy came to check in.  She gave us more reassurance that Sydney was right on track in her recovery.  Dr. Newton stopped by around 5:30 or so. He said she looks great. He wanted her to get up and walk again. First he said, "Maybe we'll try walking again later today" and Sydney said "No".  We all kind of laughed and then he said "Let's rephrase that.  Later today you will be walking again".  She wasn't thrilled but didn't argue.  After he left she ate a bit of apple sauce, a bit of a red Popsicle and drank some Sierra Mist. The nurses came in and helped her sit up, stand and take a few steps. She sat in a chair while they changed her sheets. My mom, Bryan, Kim and Maddie were all here to see her. They left shortly after that and she went back to sleep. She woke up a while ago and ate a little more apple sauce and had something to drink. It is 8:10 now and she is sleeping on and off. Brian and Jack are heading home and I think there will be no more excitement tonight. This was a big day.

DAY ZERO/ONE

Thursday, June 14, 2012

The nurses tell us that this is still considered day zero until 2:00 p.m.  After that we are on to day one post surgery.  Sydney is VERY sleepy today.  She does not wake up or talk much at all.  Dr. Newton and Dr. Fornari come by around 1:00 p.m.  They say she is doing just as they expect her to be doing and I say if they are happy, I am happy.  This is all new to me and they have seen this many of times.  Brian and Jack arrive around 8:30 a.m. and then go get us coffee and breakfast.  The nurse, Marie, had given me a much appreciated (but weak) cup of coffee early in the morning so the stronger stuff tastes good.  I feel I really need it too because the two prior nights I have not slept much at all.  Today we basically just hang in the room all day and stare at Syd. Nancy and Peggy stop by on their lunch hour and bring a pink bear and scarf. Syd opens her eyes and says hello but that is about it. They stay and chat with Jack and I for a bit and then head back to work.

My mom and Bryan arrive and shortly after so does Casey.  Sydney opens her eyes for them too but not much else.  She's not in a lot of pain, just wiped out. Later the pain management rep comes in and decides to lower her dose of morphine a bit to try and get her to wake up some. It takes a while but by the evening she is a little more alert.  My mom, Bryan and Casey stay and talk for a while and after they leave it is just the four of us again. Jack stays all day and never leaves me or Syd. Even when Brian goes for a walk or to run an errand, he wants to stay.  Before the surgery one of the many things on my mind was how Jack would deal with all of this. We spend a lot of time together and I didn't know how he would do with our routine being disrupted.  He has decided to bring our routine to the hospital and just stick close together. He has many options but wants to be here. I must say I am grateful for that because he is a lovely distraction and I would miss him terribly. He designated himself as the one to feed Syd her ice chips and cool down her wet washcloth when needed. At first she said thank you and today she has been telling him "no" and to stop. That's progress!  It's sweet to see him doing what he can to take care of her.  We all feel like we want to do something.

 
She is not loving the breathing toy she is supposed to do several times an hour. When she is awake I get her to do it but she says it hurts her chest.  The pain management rep is adamant she do it to prevent her from getting pneumonia. In the late afternoon it's time for Syd to sit on the edge of the bed for the first time. She doesn't really want to but they do it any way. The nurses provide a lot of assistance. They roll her on her side, slide her legs over the edge of the bed and pull her straight up using the sheet and pad underneath her. Sydney's face looks puffy from all of the fluids and she doesn't seem sure what to think. They make sure she keeps her eyes open so she doesn't get too dizzy.  She lasts about 30 seconds and then wants to lay down. Apparently this is normal and they say she did well.  

 
As she's waking up a bit more the tube running up her nose and in to her stomach is bothering her. It runs down her throat and she can feel it there. They are not ready to pull it out yet because there is still bile being sucked out of the stomach and they want to make sure it is all gone first. Sometime tomorrow they may try to stop the suction for four hours. If she can go all that time without getting nauseous then they will remove the tube.   I lay down around 5:00 and take a short nap. I'm tired and I don't know how much sleep I'll get tonight so I get it when I can. Brian goes to Islands and gets the three of us dinner. He and Jack leave for home around 8:00. They stop by my mom's for Gracie and Jack says she attacks him she is so excited to see him. I take a shower and make up my bed for night two. Sydney is sleeping and comfortable so I crawl in and watch t.v. until I fall asleep.