The One Where Surgery was Scheduled 3 Different Times!!

Back in May we decided to schedule the STEP procedure for Jackson to try and lengthen his bowel.  The hopes of this surgery was that the extra length would allow him to get off of TPN.  I was very anxious to get this surgery behind us and get on the road to recovery.  Jackson had not been inpatient in the hospital for well over a year so I was worried about he would handle that aspect, let alone the painful recovery.  We chose the same wonderful surgeon who had done the 2 prior surgeries for Jackson.  He has since moved to lead the surgery teams at a different hospital but agreed to come back and help with Jackson.  As he said "I like to take care of my patients and I would love to do Jackson's surgery."  We know there are many other wonderful surgeons at Primarys but we know and love Dr. Downey so we stuck with him.  

Surgery was scheduled for the first Wednesday in June.  The Friday night before surgery we got a letter in the mail saying our insurance was refusing to cover this surgery because they considered it "experimental and unnecessary."   Long story short:  Surgery was officially canceled 18 hours before scheduled surgery. We had to unpack and restock the fridge.  It was a very disappointing day.  We had to appeal  and they would take up to 3 weeks to make their decision.  Our surgeon was wonderful in helping and wrote letters and tried to make phone calls to them.   A couple weeks later we finally had the good news that Insurance would in-deed cover the surgery and we rescheduled for Wed. June 26.  

We had to go down the night before so Jackson could have lots of blood work done to make sure there was plenty of his blood available for blood transfusions.  After his last surgery, he needed several.  The day before surgery Jackson woke up with a little rash on his arms and legs.  I didn't think too much of it as he has gotten rashes before from too much sun.  He also has super sensitive skin and rashes aren't uncommon for him.  

The morning of surgery we woke up super duper early and headed to the hospital to check in.  During the night his poor rash had gone from mild to ALL over his poor body and bright red.  People in the waiting room kept staring at him.  

Again long story short: they had a pediatrician come down and he diagnosed Jax with Fifth's Disease AKA "Slap Cheek."  It's a harmless virus that just needs to run it's course.  To be extra careful they decided to cancel surgery.  We were very disappointed but understood.  Apparently there isn't a lot of research on doing a STEP procedure with someone who has Fifth's Disease.  Go figure:)

Some pictures that don't really show the severity of his rash.  He looked awful but felt 100% fine.  A fever usually precedes this rash but for some reason he never had a fever.  Surgery was rescheduled for the following Wednesday.   So basically Jackson fasted for 12 hours for nothing and I lost a lot of sleep for nothing.

We stopped on the way out of the hospital to let Jackson see the "fishies."  Who he now calls "Mee-Mow."  He was shrieking with delight to watch these cardboard fish swim around.

 Fifth's Disease is very contagious and a few days later Carter woke up with a nice case himself.  Jackson's rash only lasted a couple days....Carter's lasted for almost 2 weeks.  Although no fever for him and no discomfort.

July 3-Third time we packed up our house, emptied our fridge, dropped Carter off at Grandma's and headed to SLC.  More blood work again and another sleepless night of worry and anxiety.

                                               
We checked in at 6 am again and this time they found nothing that would prevent surgery from happening.  Jax got dressed in his hospital clothes again and was happy as could be being checked out by all the different nurses and doctors.


Lucky for us, Aunt Linsey is a surgeon at Primary Childrens Hospital.  She wasn't operating on him but she was allowed to be the one to carry him down the long hallway to the operating room and hold him until he was gassed to sleep.
                                               
Here they are going down the hall.  He knew something was different and he cried a little when I handed him over but carrying Aunt Linsey's phone did help:)

Surgery went beautifully and quicker than expected.  Before we were able to see Jax, the surgeon came out and told us that they were able to gain 29 more centimeters of small bowel.  Jackson went from 40 cm to 69.  We figured that to be about 75% more bowel and were thrilled with the results.  He still has an extremely short bowel but every centimeter is so important to us.
                                           
                                                

When they finally called me back to see him(only 1 parent allowed) he was resting nicely.  As soon as he heard my voice he woke up and wanted me to hold him and get him something to eat/drink.  It took me awhile to calm him back down and then he rested peacefully.  We were so thankful that he was able to come right off the breathing tube because last surgery he required it for several days.  He did need a tiny bit of oxygen blowing in his face to keep his SATs above 90.  The tube in his nose was a necessary evil.  He wasn't allowed anything in his stomach, even his own spit.  Everything had to be sucked out until his bowels woke up.  He tried to pull the tube out right when he woke up but really didn't mind it after that.

                                                  
He didn't sleep as well as I had hoped with all the pain meds they gave him.  He was very upset anytime anyone touched him or bothered him.  The only comfort he found was in my Iphone.  He clung to that ALL day long.  He would try and wake up to play a game and would fall asleep holding it.  I really needed to make some calls but it wasn't worth waking him and having him scream!

The hardest part of the first day was when he'd wake up and cry "Jackie wants water!  Jackie wants a bottle."  I really wished I could have given him something but he was allowed nothing by mouth.  Not even medicine.  So it either had to go in his central or rectally.  Did you know they had rectal Tylenol?  You learn something new everyday:))

Jax's main source of pain meds were 2 balls of pain meds that had tubes attached and the tubes were sewn into his tummy.  It kept just the front part of the stomach numb and we didn't have to mess with an epidural and all their complications.

                                                  
24 hours after surgery Jax felt well enough to prop his bed slightly up and he requested toys in bed.  He only had energy to play for a few minutes but he was relatively happy to stay in bed.  In packing up what seemed to be our entire house for the surgery, we forgot Jackson's movies at home!  Luckily Aunt Linsey saved the day by bringing the DVD "cars" to Jackson.  He'd never seen it before but was instantly hooked.  He watched that show about 6-8 times a day.  We all have it memorized now!

                                                
First Smile after surgery!

                                                
Day 3 brought more smiles and more toys and a bit more energy.  He wasn't really asking for food but would occasionally ask for some water.  His poor lips were so dry and started cracking and bleeding.  We introduced him to some chapstick and it was a big hit.  We called it "Gorgeous" and he asked for it frequently.

                                                  
Grandma and Grandpa came to visit on day 3 and brought Carter.  They were both excited to see each other but Jax didn't have the energy or patience to deal with anyone besides Neil or I.  Jax was introduced to Play-doh this hospital stay and he LOVED it.  In fact the first time I got it out he told a BIG Ole' Bite out of it.  There were many problems to this as 1) play-doh is not meant to be eaten, 2) he was on a strict NOTHING by mouth, and 3) he's allergic to wheat and play-doh is 90% wheat.  He was so sore and so numb in the mid-section that he'd keep tipping over while trying to play with Play-doh and we'd have to keep sitting him upright.

Sleeping at the hospital is a joke.  They had a pull out couch for one of us but between all the alarms going off, his meds needing changed, and the horrible nightmares he started having, we were lucky if we slept more than 45 minutes at a time or more than 4 hours a night.  Neil and I traded off sleeping at the hospital to ensure someone was at least rested.

Like I said his energy wasn't great for quite awhile so he would often fall asleep in the middle of play time.  

To try and keep all of us sane we started taking him out in the wagon a couple times a day.  He enjoyed getting out and seeing things but didn't enjoy the transfer from the bed to wagon.  That was very painful.  It took 2 of us to take him around.  1 to pull the wagon and 1 to push the giant IV pole that was connected to him.

Day 4 was a big day.  Jax was able to ditch the nose tube and was allowed clear liquids for the first time.  This was tricky.  Having short gut he isn't able to drink Juice or anything like that.  All he drinks at home is water and formula.  After begging for water or a bottle, when he was finally allowed he wanted nothing to do with them.  I know his stomach was still quite upset but we wanted it to start working again so we would syringe tiny amounts of water into his mouth.  He handled that quite well with no vomiting.

                                            
When he refused water they consented to let him try formula.  I thought he would be thrilled to have his bottle back but I had to bribe him with a movie to take a sip.  It took over 2 weeks for his full appetite to come back.

Once the nose tube was gone and the pain balls were disconnected, we were free to roam about the hospital.  Jax didn't feel like walking until day 5.  It took him a few hours to regain his balance again but soon he was walking around like nothing had happened.  By day 6 we could barely keep up with him pushing the IV pole.

One of his favorite places, seeing the train go round and round in the glass case.

All the nurses (and us) were so amazed that he could/would sit like this after having major abdominal surgery.  This was his preferred resting position though! 

After refusing much formula for a couple days they gave him the all clear to eat whatever he wanted.  I asked him what he wanted to eat and he requested his favorites of "Hamboogies and Tatos!"  Looking back it was a little ambitious and his stomach let us know that 12 hours later.  Day 6 started the vomiting which lasted off and one for another week:(

We spent lots of time in bed snuggling and playing Ipad.

                                                     
Day 7 brought a drop in IV fluids and gave us 4 free hours a day of being connected to nothing!  We took advantage of our freedom and let him roam all 4 floors of the hospital.  He was in heaven and was no longer walking gingerly, he was running and climbing on everything.  He truly was the cutest one there rocking the ever famous hospital gown and pants.

                                                  
We went and saw "Nemo" about 80 times a day and he would stand there and squeal as long as we'd let him.

This was Jackson's face when I told him that on day 8 we got to go HOME!!!  We were so ready to sleep in our own beds and eat our own food.  Being home wasn't easy but it was far better than the hospital.

As soon as we pulled up to our house, Jax jumped out of the car and went straight to find the Kitty and make sure he had an overflowing bowl of cat food.

And then he threw up all over the carpet:(  

Jax came home on 20 hours of TPN a day.  This was by far the hardest part.  He is usually only connected at night, and not even every night.  It was quite stressful to make sure he didn't snap his line or get it caught on anything.  I thought about putting the bag of fluids and the pump in his backpack and make him wear it on his back.

He immediately tipped over from the weight of it.  He was not quite ready for that responsibility!

My next best option was to put up a baby gate and keep him fenced in.  I hated to do it but it truly was a life saver so I could shower and occasionally use the bathroom.  I gave him just enough room to roam without moving his backpack.  And Carter took his role as big brother seriously and was a fantastic helper.  I truly could not have made it through a lot of the days without him.

With low energy and being attached to his pump, I brought his big chair out to the front room and turned on "Cars" to buy me some free time.  He loved sitting there and made sure to apply lots and lots of "Gorgeous" to his lips:)

We were home for one glorious week when disaster stuck.  It really wasn't a surprise as it was kind of expected.  But 8 days after being released he was admitted back to the hospital with a line infection.

When we first got to the ER and the room was full of about 10 doctors(no joke) he broke down in a screaming fit, threw himself on the floor, and kicked and screamed for a good 10 minutes.  All the while, screaming "I want to go home."  I really wanted to join in the tantrum but there wasn't enough room for both of us on the floor!

Once we got up to his private room he had calmed down and was feeling perfectly fine.  He only had a fever for about an hour and the rest of the infection acted great.  He made himself right at home and ordered a big bowl of plain Rice!

Luckily as the days went on he took full advantage of a private dietitian and Chef and really went to town.  90% of the time he requested Steak and Potatoes.  With a side of rice!  His appetite really started to come back this week.  

Sleeping was still a struggle and it took one of us a good hour to get him to fall asleep for naps or bedtime.  But he didn't really have nightmares this stay and when we could keep the nurses out of his room during the night, he basically slept all night.

We even tricked him one day to drink his milk from his sippy cup!

This naptime was Neil's turn to try and get the beast asleep.  I left to eat lunch and came back to find them both asleep in bed.  Neil's company was great and he was able to be at the hospital with us for most of the 2 weeks we were there.  We are very thankful that he has such understanding and caring bosses..

He ate steak 2-3 meals a day.  Neil was more than happy to finish his leftovers when needed!

6 days after admission he was released from the hospital and we were sent home on only 12 hours of TPN and then decreased quickly to 10 hours and hopefully we can keep going down.  Full results can take anywhere from 6-12 months to manifest so we are trying to be patient.  

J