Surgery # 3 and recovery

This time handing Reid off to the surgeons was easier.  We knew he was in good hands and we were anxious to just get it over with.  This surgery was going to take his double colon and 1) detach it from his right bladder and 2) make it one large colon -think double barrel shotgun and make it a single barrel shot gun instead.  Reid's urologist was also going to be in the operating room just to look at Reid's anatomy again to make sure things were still working as they were suppose to.  His anatomy is so unique that any chance that his surgeons have to see inside him they take it.  So to say the least we were  slightly more at ease with this surgery over his last surgery.  So off he went and we went to the place we were just at 2 weeks ago, the surgical waiting room.  This surgery again took longer than expected. I hate that.  It was about 4 hours until Dr. Sullivan his general surgeon came out to tell us that he did great.  She said he is a chunky baby and he had 1 inch of fat on him (breastfed baby!) so she had to cut him more than she expected to get a good view of his colon and bladder.  When we got back to the PACU we didn't realize how much more she had to cut him!  His poor tummy was cut open from one side to the next.  He looked like a little frankenstein with 2 very swollen stomas.

 He also had a feeding tube in his nose because he couldn't eat until he was able to poop.  When a child has surgery on their colon or bottom they have to wait a few days after surgery for the inflammation of the colon/bottom to decrease.  But in the mean time the liver is still making bile and filling the stomach with that bile.  So Reid got a NG tube that went to his belly and they put suction on the tube so that any bile was sucked out.  If they didn't do this the bile would fill his tummy and eventually he would throw it up.  He didn't really mind the NG tube which was surprising.  I was shocked at how much gunk (bile) they were getting out of him.  I did notice that the suction seemed to be really high and I didn't quite understand at the time the reason that they were doing this.  All I was concerned with was the fact that he couldn't eat until he pooped.  Which meant I was pumping again.  I hate pumping.  Thursday night Reid just slept all night.  He was tired from surgery and needed to heal, but this was okay with us because the SF Giants were in the playoffs!  That first night nurses and Dr's would walk in our room to "check on" the sleeping child who was hooked up to a monitor and slowly walk out while watching the TV.  We were fine with it other than the Dr. who wasn't discreet about it and just walked in and stood in front of the TV.  Um at least pretend to be doing something.  Friday Reid was in good spirits but didn't like the bottles.  He has not been a bottle kid other than when he was sedated after his last surgery.  So this was a worry for everyone.  

While we were in the hospital I told the nurses to not worry about cathing him, that Michael and I would do it each time.  This wasn't to step on anyones toes but we knew how to do it and do it well.  They seemed to have trouble so it was just easier for us to do it.  His urologist supported this and had to tell the nurses a couple times to not cath him and just let us do it.  I was happy when he told one nurse in front of me "Mom knows how to do this better than you because you tried 4 times and couldn't do it, follow my orders and let Mom do it".  I didn't like that nurse so this was nice ;)  Sunday morning (3 days after surgery) Reid finally pooped out of his stoma!  This meant he was able to eat.  Hooray!  No more pumping!  So I nursed him.  Ooops to much… he threw up about 30 minutes later.  So I waited 3 more hours and tried again… same thing. WTF.  Did we have another problem on our hands?  Luckily the nurses had confidence in Reid and my ability to know my son and asked me.  I said I think he just needed to be eased into eating and I should have started with bottles and little amounts.  They agreed and so back to bottles and pumping.  

To be honest I don't remember anything big after this point… we were released to go home the next morning, Monday which had made that our shortest hospital stay! I was so excited to come home and see Parker!  We were told by Reid's urologist to continue cathing him but only 2 times a day now which was nice.  I was hoping to leave the hospital and not have to cath him anymore but oh well. Twice a day wasn't bad.  This was progress.  

That evening Reid was very fussy.  My Mom volunteered to stay the night with us just incase I needed to sleep and Reid decided he wanted to be up all night which was typical of him.  So we went about our evening and it was bath time.  Reid still was only able to have sponge baths so into this netting he went and I washed him up.  Since his spinal surgery I had been VERY VERY careful to not get any water on his back.  I squeezed out any water I could and then dabbed him with the wash cloth.  I picked him up and in the mirror I saw his back. 

My heart stopped.  

Did his back incision look… open?

Did it always look like that?

I knew the answer to these questions. I instantly knew.  

His incision had opened.  

I yelled for my Mom and she said call the neuro surgeon.  

He had looked at Reid's back that morning before we were discharged and maybe he had seen this?

Was this okay?

I knew it wasn't.

I finally got a hold of a different pediatric neurosurgeon and had to explain Reid's story (this takes time) and what had happened.  

I also noticed he had a fever.  

His first fever.

CUE PANIC

I felt like I was going to throw up.

Come on! Seriously, I just got home!

The next morning (after sleeping maybe 2 hours and taking turns holding him with my Mom <3) I spoke to his neuro surgeon who said bring him to their ER and they would admit us to look at his back. So we dropped off Parker at the babysitters and went to Santa Clara.  

The place we had just left 22 hours before… we were back. 

Week at home.. back at hospital.

Home.  It felt so good to walk into my house with Reid and sit on my couch and look at my stuff and not hear monitors beeping, kids crying, nurses chatting.  It was glorious.  Until 30 minutes later when I had to cath Reid.  The first day it took 3 people to cath it.  One to hold him down and try to distract him, one to cath him, and one to hold the cup where the pee went into.  This sucked.  The first time the cath wasn't going in as easy as before and I starting freaking out.  Was I pushing too hard, he was screaming so much I didn't know what to do.  I couldn't get it in.  I was ready to give up, he was sweaty and screaming, and I was on the verge of a panic attack.  I couldn't do this, was this my new normal?  I didn't want to do it and he hated me doing it.  Finally after a few minutes of trying I felt the cath move into his bladder and pee started to come out.  EXHALE.  We made it, we did our first cathing outside of the hospital.  It was scary but we did it, unfortunately not alone.  I hate asking for help, and I needed help.  Every 3 hours I needed 2 other people to help me.  Luckily I have an AMAZING family who were here for me.  Every 3 hours, they coordinated between themselves who was going to help me.  It is so humbling even when it's your own family. The first day was the hardest. Michael and I woke Reid up at 3am to cath him and hope that it didn't wake up Parker… which it didn't.  Everytime I touched Reid I would grab his diaper and hope and pray that there would be urine in the diaper.  I didn't know if I could do this forever and it was wearing on me.  It was difficult and he screamed so much I hated doing it.  After 2 days I was able to cath him with only 2 people thanks to my amazing husband and his ability to rig stuff up that works in the oddest ways.  He cut a hole in the lid of the cup that Reid's urine goes into and we were able to thread the cath through the lid so that we didn't have to hold the cup and pee wouldn't get everywhere!  Thank you Michael :) I also found that if I cathed him while he was in his bath net (Reid could only be sponge bathed) it trapped his legs underneath and I could cath him myself.  I was pretty flipping proud of myself.  And the mirror distracted him enough to not make him scream.  After cathing him for 5 days I picked him up and laid him on his changing pad for him morning cath but this time was different and life changing.  HE HAD PEED IN HIS DIAPER!!! I cried.  I cried and yelled for Michael and he was just as happy as I was.

It's adorable how much they love each other. 

Parker gets Starbucks when he stays at Papa and Gigi's.

Two TV watchers. 

That week went by so fast. One thing that I knew I needed to do was see a therapist.  After the awful time I had mentally and emotionally during our last hospital stay I knew that I needed some help.  So I saw someone.  It helped to talk… but they couldn't get my any medication to help during the really scary moments quick enough :(

I had created such a bubble for Reid and I that it was nice to just talk to someone new.  I don't know if it was because of the new events in my life or the effect of sleep deprivation but my personality and soul changed.  Ever since returning from the NICU I felt like I wasn't as socially pleasant as I used to be.  It was like I had so much to worry about that societal norms went out the window.  I found myself being very self centered and only talking about Reid to others and what we went through… without then asking about other people.  I didn't like this, I didn't like the person that these life experiences had made me.  I felt tainted.  I felt as if because of all this I had a dark spot in my soul that could never be taken away or resolved.  Why did this happen to me.  Before all of this I prided myself on always having a positive perspective on things.  Even in the worst of situations I found the silver lining.  I was able to still be happy and unaltered by negativity in my life.  But not anymore.  Don't get my wrong my heart warmed when I looked at Reid and I truly loved adding him to our lives, but that didn't erase the emotions that I had felt.  I had never felt anything like that before, I never knew what fear was until our NICU stay and then Reid's first surgery.  Eventually I hope that I will be able to look back on this time in our lives and feel grateful that we made it.  We made it out of this scary time and have conquered.  One day.

As the week at home was coming to an end I started to get very panicky again.  I was worried about Reid going under anesthesia again so quickly, but I trusted our surgeons.  I was happy that this surgery was going to be performed by Dr. Sullivan who we loved.  Since Reid had started peeing on his own we were hoping to be able to stop cathing him while we were in the hospital.  I didn't want to think about how long we were going to stay for this surgery.  I didn't want to get my hopes up about going home so I just packed for 2 weeks and was hoping to not have to request new clothes from my family.  I was hoping to soak up as much Parker time as I could…. but 2 days before leaving he spiked a fever. :( This meant he had to go stay at my parents because Reid absolutely could not get sick.  If he had a fever or cough during that week his surgery was going to be canceled.  This would push his colostomy reversal farther back and my return to work.  I was over his colostomy.  I was so over him leaking out of his diapers at least once a day and up to 4 times a day on a bad day.  So we had to say goodbye to Parker early and just FaceTime with him to say bye.  I hated this.  I hated being away from Parker.  If you would have asked me when I was pregnant with Parker or Reid if Parker would even be staying at my parents house for 2+ weeks I would say you were crazy.  But life throws curve balls and I am being thankful that I have such great parents to be able to take him in without a second thought and then go see him his first night back at home because they miss him.  We are so lucky.

The night before leaving for Reid's surgery I couldn't sleep.  I was so scared about what was going to happen during this surgery and hospital stay.  I couldn't take anymore surprises.  But the sun came up, and the day went on.  I checked Reid into the pediatric ward and sat with him while he played in the crib.  This was happening and instead of being scared and wanting to run I embraced it and decided try and make this a positive thing.  Looking at the positive: Reid does not have any life threatening complications.  He has an amazing team working on him and the nurses ADORE him.  Everyone talks about how cute he is and regardless of if they say that to everyone, it made me feel like they really believed he was the cutest.  We were lucky enough to be able to stay at the JW house again which only houses 4 families at a time.  The hospital that Reid has had all his procedures at is a teaching hospital so while the residents and nurses are being taught I am learning with them.  I really liked this because I think education is so important.  It means that our hospital is up to date with the current research and has knowledgable surgeons to be able to teach future surgeons.  Reid, he was my biggest positive.  Throughout all this crap; surgeries, procedures, needles, catheters, all of it he stills smiles.  He was still such a happy boy.  I am most grateful for this. I think that if he wasn't as happy this would be more difficult.  If I had to see him in pain and not enjoying life I would hate life as well.  But he has no idea that anything is wrong with him.  To him the hospital is just another place where people smile and talk to him.  Sure he gets a needle prick every once in a while but he forgives quickly.  So here we were waiting for surgery # 3 (really 3!)

Walking up to the Pedi floor. 

Reid kept trying to pull out his IV so he had to get a "NO NO" band to keep his hands straight.  They didn't work. 

Tethered Cord surgery and Recovery

After we left the Pre-Op area we went to the waiting room where our family was sitting.  It is so amazing to have a support system who just sits and waits with you.  If you ever know someone who is going through a medical challenge, just sit with them.  Trust me it will mean more than you think.  We sat and we waited.  The surgery was suppose to be 3-4 hours.  Time went by SO SLOW. This was a scary surgery.  Paralysis was a possible complication of this surgery and of course as a parent you have a hard time focusing on anything but the worst case scenario.  3 hours went by…. 4 hours went by… just before 5 hours his number on the screen in the surgical waiting room changed colors to closing.  THANK GOODNESS. They were about done. I felt such a weight lifted when I saw that.  There was still about a 45 minute wait but at least they were done with the scary part.  The surgeon and his physicians assistant (Dr. Duncan and Dan) came out at almost the 6 hour mark and said Reid is in PACU (post anesthesia care unit).  They said his legs are working fine, there was never any loss of nerve function during the surgery.  He did lose more blood than they expected so he had to be given some blood but that was not unexpected.

They had to chip away more of his spine than they thought to cut the tumor out.  He described to us that Reid's nerve endings and the fatty tumor they were attached to looked like a tree with a large tree stump.  Nerve endings are suppose to be free flowing through the spine and hang above the tail bone.  Reid's were attached though to a tumor.  Imagine the tumor in the tree stump and the trunk are his nerves.  Rather than cutting the nerves or cutting the tree off the stump the Dr. decided to take another approach.  By cutting nerves there could have been a ton of damage.  You never want to mess with nerves.  So he chipped away at the tumor (tree stump) and hollowed it out to make it look like a canoe.  That was the nerves were free flowing again.  He chipped it away so much that hopefully it won't re-attach later in life.  Unfortunately this is a possibility.  Tethered cords re-attach to a fatty tumor about 25% of the time.

So while that is a possibility all we were happy about was that Reid wasn't paralyzed.  We went back to the PACU and Reid was asleep.  After just a couple minutes he started to barley wake up and he moved.  I never thought I would be so happy that my child is moving.

After walking upstairs to the PICU all the nurses started getting busy.  They hooked him up to the monitors, moved his folley bags (2 bladders remember) to their proper place, tried to have us use a colostomy bag again to help with healing and keeping his back 100% poop free and to let him rest.  Because the surgery involved opening his spine he had to be on sedation medication so that he would stay flat for 48 hours to let the inner layers of his skin heal up before testing them out and seeing if he starts leaking spinal fluid.  The drugs were strong enough to keep him very very sleepy.  He would wake up to have a bottle and then go back to sleep. 

 I couldn't hold him until Saturday morning after they turned off the sedation drugs.  It was a long 2 days.  During those days Michael and I sat in his PICU room, talked to nurses and watched lots of Netflix.  When Saturday morning rolled around I was very excited to pick him up and try to nurse him again.  I was scared that he would not want to anymore since he had bottles for 2 whole days. 

Saturday morning Michael and I walked over to the PICU and asked if it was time… the nurses said yes.  So at 8am they turned off his sedation drugs.  He was still pretty sleepy so we wanted him to wake up on his own.  After a few hours it was time for him to eat so I woke him up and snuggled with him.  I fed him and he drank for maybe 30 seconds and didn't want anymore.  I didn't want to push it so I just let him sleep.  He was really waking up at this point and was flailing his arms around all over the place. To the point where I put him back in bed because his arms and legs were going crazy.  

He spit up pretty quickly, but I didn't think anything of it.  After this Reid was really fussy so we tried to hold him, but he was still flailing around so we put him down and he would cry.  The nurses thought maybe he was in pain so they gave him tylenol.  His heart rate was pretty high but no one seemed concerned so we didn't think anything of it.  They took out one of his follies to let him start peeing on his when they turned off his medication and he hadn't peed yet.  I tried feeding him again and still he didn't want to eat.  He would have a tiny bit and spit up shortly after. Something was going on.  By the evening Reid still hadn't peed, barely took any liquids and starting actually vomitting.  What was going on with my kiddo?! Increased heart rate, lack of urine, vomitting, no appetite, and very very sweaty.  One of his nurses finally said, this looks like withdrawal.  LIGHT BULB! Yes this was textbook withdrawal.  Poor baby was having a tough time coming off his sedation drugs since they weren't weaned off but just shut off.  So we had to talk to the Dr's.  They Dr's wanted to re-introduce the sedation drugs and then slowly wean him off of them.  I didn't care what they did I just wanted him to be ok.  Michael however was very against this.  He said Reid had already been withdrawing for 12 + hours so why start over, let him finish this.  At this point his resting heart rate was in the 180-200's!  Crazy high.  Michael finally decided that I'm the Mom so I can choose.  I said do it.  Well that afternoon Reid had pulled out his IV and they couldn't get one back in.  So no sedation drugs.  He finally started to act normal again at around 9pm, except he hadn't peed.  Ummm it had been 12 hours since he peed… not even the bladder with the folly still in had produced urine.  So that was our next hurdle.  The nurses tried to re-insert the folly thinking that would allow for urine to escape.  They weren't saying it but they and we thought had lost function of at least 1 bladder.  The nurses and Dr's had such a hard time re-inserting the folly. This is very uncomfortable and Reid was screaming throughout the procedure.  The Dr decided that Reid needed to go under an ultrasound to be able to assist in inserting the folly.  If this didn't work he was going to be transferred to a different hospital because this late at night on a Saturday they couldn't get a hold of a pediatric urologist.  Shut the front door. ON TOP OF ALL THIS Michael was leaving that night.  He started work Monday and the only way he could get home was a friend getting him Saturday.  We didn't expect to still be in the hospital.  I was so scared to be alone at this point.  It was one thing after the other going wrong with him.  I couldn't take it.  I was freaking out.  

The Dr. was finally able to get the folly back in… hooray.  BUT nothing was consistently coming out. ummm isn't that suppose to work like every time?  We went back to the JW house that night and I cried and cried.  I was so scared to deal with these things alone but we didn't have a choice.  Michael had to go to work.  The next morning when I woke up I didn't want to go see Reid.  I didn't want to hear the bad news that was awaiting me.  I just wanted to stay at the JW house where I could pretend nothing was wrong.  But Reid needed his mommy.  So I went.  He still hadn't peed.  Throughout the day we waited.  I thought for sure his kidneys were now failing on top of his bladders no longer working.  IT was a long day of stress.  I was barely eating.  I was like a zombie.  There but not actually present.  I just sat there.  Luckily I have amazing parents who came up to stay with me that day and brought Parker, who is always a delight to see.  I asked my Mom if she could stay with me until Reid went home, I couldn't do this alone.  I realized that too late and was on the verge of a mental breakdown.  Sunday night my Mom and I sat in Reid's room looking for any answers.  None of the weekend Dr's knew why Reid wasn't peeing.  It had been 24 hours since a tiny bit of pee came out.  His nurse (the one who thought he may be withdrawing) thought he would try a few things.  He put a syringe in Reid's folly line and pulled back on the syringe sucking out whatever would come out.  From his right bladder urine came out!  So urine was there, just not dropping into this folly bag.  Then he tried from his left side and nothing.  He pushed some saline in and tried again, no more than the saline.  Ugh why.  Why was this happening and what was wrong with him.  The Dr's said because his anatomy was so different they had no idea what to expect.  As I sat next to Reids crib and silently prayed that he be okay my Mom exclaimed… theres pee in his bag.  !!!!!!!! Sure enough from the left side, the side that was giving us the hardest time, there was more urine in the folly bag.  We waited and even more came out.  I was jumping up and down, my Mom was exclaiming that he peed, I ran out and told his nurse who was just as happy as I was.  He finally peed!! After about 5 minutes of celebrating I told the nurse, I need to leave now and eat.  I hadn't eaten barely anything since Saturday morning and all of a sudden I was starving! 

After being able to release urine, Reid was back to his happy self.  But his follies were still in. Monday morning his urologist came by to check on him and he said pull the follies again one at a time.  If after 12 hours there is no urine do a bladder scan to see if there is urine in his bladder and if he had a significant amount then do a straight cath.  This was basically putting a folly in, but just to release the urine and then take it out.  We were happy to have a plan.  That day I wanted pee.  I wanted pee so bad for my baby!  But none came.  That night the nurses had a tough time cathing him again until our angel of a nurse came in and cathed him on his first try.  He talked so sweetly to Reid before any procedure and Reid loved him.  We learned that he had a neurogenic bladder (what we thought Reid had since he had gone 3 days without peeing himself and it was a known complication of his spinal surgery) and was a fully functioning adult.  This made me so happy.  To know that even if Reid's bladders weren't working it wasn't the end of the world.  He would be okay.  Yes it would suck but it would be okay.  

His neuro team came by on Tuesday and said that the sensors on Reid's nerves never showed any change in function so they thought what Reid had was spinal shock, but to his bladders.  They said hopefully in the next few weeks or months he would be able to empty his bladders on his own.  So I had to learn how to insert a catheter.  Michael was able to come to the JW house after work Tuesday night so that he could learn from our angel nurse Bryan how to cath Reid.  He did it so wonderfully that Reid barely cried.  Unfortunately the other nurses weren't as good.  Not their fault, they didn't have as much experience doing it on such a tiny baby.  Bryan had done it himself for years.  The urologist taught me how to do it and then Bryan watched me a couple times.  This was going to be our new normal, every 3 hours during the day and once during the night.  Wow.  This would be different.  Wednesday morning the nurses said Reid had been discharged by all his Dr's, so after cathing him one last time we were free.  8 days of in the hospital and we were able to go home.  I missed Parker so much and was ready to get into our routine… before his next surgery 7 days later.