Day 5

Sunday morning, I hear my phone going off and all I could think was..."Whoever is calling me better be on fire, because I am SLEEPING for once this week.  And if you are on fire, you really need to call 911, not me!"  Our apartment was pitch black and I had no clue what time it was, nor did I care.  I was tired, and all I wanted was to sleep and someone keeps calling.  I crawl out of bed and finally get to the phone and hear Scott's perky little voice on the other end.  Why in the he** are you calling me, and why in the he** are you so perky?  After he fills me in on the actual time, which is now 10am, he tells me to hurry up and get to the hospital Rhett is sitting up!!!!  (In my defense, it felt like 6am and daylight savings was thrown in there...so who really knew what time it was.  And did I mention it was pitch black in our apt???)  I don't think I have slept until 10 am in 5 years,but it felt good!!!  So, I drag my lazy butt out of bed and head to the hospital.
Good news, good news!  Dr. G says Rhett can be released if we are comfortable taking him home today.  I was a little hesitant, I mean I just learned how to change his diaper yesterday and let's be honest here...I suck at it.  What if I am not capible of taking care of him?  Am I smart enough to know when there is a problem and when I am just being paranoid?  What if I hurt him...I can't really even hold him and move.  I still haven't successfully picked him up without hurting him...oh crap this is not going to work!  What is the number to the tethered cord recovery hotline or can I just take Rhett's favorite nurse, Jess home with me???  Don't think for a second Scott did not ask if she would come home with us.  So maybe when I said a little hesitant, I was completely full of crap...I was completely hesitant and basically scared to death.  I come from a long line of tough cookie's and I am now scared of a 21 lb tiny person...what is wrong with this picture?  I am going soft in my old age.  What would my grandmother say about this weakness???  I know exactly what she would say, and it would most likely be that I am this child's mother and it is my job to take care of him, so suck it up and get with the program. 
Scott and I agreed we would see how the day went and how Rhett was doing with sitting up etc.  Well we quickly found out Mr. Rhett was doing just fine and dandy.  He was sitting up perfectly, he was having a blast cruising the halls in his stroller going on rounds with his nurse, Noel (still just in his diaper) and he now had a high chair in his room for the special lunch the lady in the cafeteria prepared for him.  She decided she would just go ahead and puree butternut squash and a banana for him, because she just knew he would love it.  This is like a 5 star hospital!  He has charmed all of these people in this hospital with his sweet little smile and chunky little cheeks...imagine what kind of little con man he would be if he could talk (he would be Reid LOL).  He seemed to be feeling much better!  After lunch, I finally got him down for a nap when our fabulous neighbors begin to assault each other while using lovely language completely inappropriate for a children's hospital.
Have I mentioned our new neighbors???  Well let me fill you in...  When Nova was released to go home, we were given the pleasure of sharing a room with Massachusetts finest!  It was a lovely family consisting of a 3 mth old baby, his 18 yr old parents, the grandmother and great grandmother.  Now, when the grandmothers were present, all was well...but when the grandmothers were away the kids would try and kill each other!  The baby was there for seizures,  so one would think the 18 yr old parents could put aside their dispute about what happened at the bowling alley 2 nights ago...but no, that wasn't the case.  Just as Rhett is good and asleep...here these two meatheads go after it, yelling and screaming at each other.  Then suddenly,  "Baby Daddy" decides he is done and he is leaving (with no shoes on his feet I should add).  Next thing I know, Rhett is screaming, she is yelling and running after "Baby Daddy" ,and their baby is in his crib crying.  Are you freaking kidding me?  Sometimes I think the freaks seek me out.  So I call the nurse to come in and fill her in on what happened.  I told her they had just had a "knock down, drag out fight..." and she looks at me confused and says "A What?"  So I say it again but slower this time, "a knock down, drag out fight".  She stills looks confused.  "Haven't you ever heard that?"  I say as if she seriously needs to get a clue.  She has absolutely no idea what I am talking about, so I explain as she is laughing at me. 
The two love birds finally make it back to the room and apparently have not made up,because as soon as the nurse finishes interrogating them and leaves...here they go again.  I wanted so badly to intervene with a little Dr. Phil action and tell them both to "shut the front door...you need to suck up and pipe down!"...but the nosey-rosey in me took over.  I had to hear where this was going before breaking up the madness.  It was like a train wreck, you know you should look, but you just have to.  So they proceed with the yelling and apparently one of our young parents hit the other.  Mom beat up Dad and Dad is "gonna call the cops and have her arrested in the middle of the hospital" as he so graciously put it.  Let me tell you what, first of all I would never physically assualt my husband (or in her case Baby Daddy) much less do it in a public setting!  Second, if I were her, I would give him a reason to call the cops and have me arrested (that is if he still had fingers to dial 911)...this guy is a punk and probably deserved whatever she gave him.  Baby Daddy had not shut his loud mouth since he got there, it was a constant stream of yelling, and the king daddy of bad words.  Too bad when she hit him, it wasn't in the throat! (That wasn't nice of me to say...Oh well)
So when Scott walked in, I filled him in on the Jerry Springer Show I just had front row seats to and asked him if I should go tell the nurse they were at it again.  If they hadn't been so loud and dramatic, I probably would have not said anything.  But they kept waking Rhett up, which if you have a tiny baby, you completly understand the rage I was experienceing.  Number 1 Rule:  NEVER, I REPEAT NEVER WAKE A SLEEPING BABY, it never ends well!  So I go tell the nurse the latest in their saga and she told me they had an idea of what was going on and had called social services to intervene.  Well, this answered my question on whether we will be checking out of Hotel California...yes...let's get those discharge papers rolling!  And make it snappy
Rhett was officially a free man!  We checked out and were on our way home to our comfy little apartment.  Dr. G wanted to see Rhett on Wed to do a check-up and we would go from there on how long she would keep us in town. 

Day 4

So here we are Day 4 of hospital life.  Tired doesn’t even begin to describe it.  I had spent another sleepless night crouched over the side of Rhett’s crib…How on earth did Scott sleep through this?  The pain is always worse at night and I can’t figure out why that is???  It was 4am and one of the Nurses popped in to check his vitals when she told me I needed to get some rest.  Really?  What a great idea…why didn’t I think of that?  Oh that’s right, I did 2 hours ago when Jonathan, (Rhett’s weekend nurse) tried to convince me Rhett wasn’t in pain, he was just bored… when I asked for pain meds.  Well, this did not sit well with “Vitals Nurse”.  She went after Nurse Jonathan and I hear her coming down the hall behind him yelling “What good are we doing her if she is too exhausted to take care of this baby?  He needs his pain medication so they both can get some sleep!”   Finally a voice of reason!  Give the baby his drugs and while we have them out…I’ll take a double of whatever he is having!  Still, I cannot wrap my head around how Scott slept through any of this???

So day 4, we had BIG PLANS for day 4.  Rhett was supposed to sit up today.  Slowly they began to elevate his bed, and slowly I could tell he wasn’t happy.  Every time they would attempt to get him upright, he would scream.  They said it could be hurting him because they cut into his back muscles and they just weren’t ready for this much pressure, or he could be getting a headache.  We never really got upright on Day 4, so this wasn’t good, but he did seem to be feeling better.  One of the nurses brought a stroller in, so he could for a ride and get out of his room…which he loved.  Scott took him for a little stroll around the 9^th floor and he was loving it.  He had one of the 30 balloons Mimi & Pee Paw sent, tied to his new wheels & he was ready to rock.  He was a free man!  A free, naked man in a stroller with balloons tied all around it.  He refused to wear his clothes; he was only participating if he could go in his diaper…if only I had a picture of this sight!  This child is a mess…wonder where he gets his stubborn personality???

That afternoon, we noticed the little boy next door to us wasn’t doing well and most likely would not make it through the night.  Scott was telling me there were probably 100 visitors in and out of his room all day and it didn’t look good.  I couldn’t help but think how horrible that must feel.  When we returned to the hospital after dinner, I went into Rhett’s room and he was gone.  I walked back out to check and see if I was in the right room and it said “Wyss 903” on the wall…ok???  My heart sank into my stomach and all I could think is “Where is Rhett?  What happened? Is he OK?  The little boy next to us passing away flashes into my mind…”Oh my gosh…WHAT HAPPENED?”  I took off running to the Nurse’s Station in a panic.  Did someone steal him?  Is he hurt?  Did something happen and they had to rush him to ICU???  I get there, and all I could blurt out is “WHERE IS RHETT???”

A lady I have never seen is just looking at me. 

“Wyss…903…Rhett!  Where is he?  He is gone!  He’s not in his room!”

“Oh, you mean Moose?  He is right over there playing on the computer.”

I look over and there is my baby giggling, drooling and banging away on the keyboard…wearing nothing but his diaper.  I felt like going down to the 6^th floor and checking myself in to the Cardiac ICU.  Someone needs to leave a note if they are going to highjack your kid…holy cow.  I think by this point, it is evident I am sleep deprived and need to go home and rest, before I am interrogated and start giving out national secrets.  Scott (aka The Dad Who Doesn’t Wake Up) is up to bat tonight, he will have to step up to the plate and take care of the baby. 

So the Wyss Family has left their mark at CHB.  Scott is “The Dad Who Doesn’t Wake Up”, Rhett is “Moose” and I am apparently some hillbilly from Alabama.  If it isn’t the accent I wasn’t aware that I had, (fixin’ & ya’ll isn’t in there vocab, nor is “knockdown, drag out fight”) it is the blonde hair. I have had more people point out, that I am “not from around here”, and when they figure this out (evidently as soon as I open my mouth) they have a great sense of accomplishment, like they just discovered the meaning of life.  I get it from every cashier, security guard, nurse, intern, resident, parent and random guy in the elevator….I get it already! 

The good news for the day is Scott discovered the kitchen not only has all the chocolate milk you can drink, but they also have all the ice cream you can eat!  So after reclaiming our naked, drooling, giggle box & and ice cream party; I headed to the apartment for some much needed sleep.  Until tomorrow…I am going to bed for now.  Scott, look alive, you are in charge tonight!  Poor Rhett…good luck little buddy!

Day3

Friday morning rolled around and I was on my way back to the hospital.  I would just like to add that by Friday, I had become quite the Boston driver.  Not only do I know where I am going, I drive like every other Bostonian…I DO NOT obey ANY traffic laws (other than yielding to Pedestrians of course), I honk at anybody or anything that gets in my way (this is a great stress reliever btw), and most importantly I stop in the middle of the road when there is no where to park and put my hazards on.  I actually saw a Boston Police car parked in the middle of the road and the copper was walking into Boloco.  That would be like stopping in the middle of Hulen to go into Snookie’s because the parking lot is full.  Who does this?  Boston PD that’s who.  So it is raining, it is cold and I have learned to drive like what kind of driver I envision Reid would be, if I gave him the keys to my car and told him to tear a**. 

I get to the hospital to find that Rhett has decided he is going to make some sort of escape from his bed, and has attempted to CRAWL!!!  Who is this kid & what is he thinking???  CRAWL???  You just had major back surgery dude and you haven’t even been able to sit up, you can’t even lay on you back….but you think you can crawl???  So out came the Morphine…yet again.  We were trying to wean him off the heavy stuff and here you go trying to crawl and now you are in some serious pain!!!  This would also be the last bit of Morphine Mr. Rhett would be getting, due to the fact that he ripped his IVs out of his arm.  If I didn’t know any better, I would think he was planning his big escape.   Not only that, but I learned Scott has now been given the title of “The Dad who doesn’t wake up”…awesome I know!  This is what happens when I leave the hospital for one night and put Scott in charge!!!

That morning, Scott went to the office and Rhett and I prepared for a long day.  Dr. G gave the go ahead for Rhett to move on to his back.  We were slowly making progress here.  Fever was dropping; we were down to just a mild fever.  Pain was under control, we were now just doing Tylenol and Codeine and we were starting to gain a little bit of our appetite back.  Slowly but surely, he was improving and my little tiny baby was becoming the rambunctious little animal I am used to.  

After sitting in a hospital room day after day, I was realizing Rhett needed some excitement.  I had brought his favorite toys for him to play with and his favorite blankies to make him feel more at home.  I figured if I was tired of looking at this boring room, I knew he would be too, so I decided I would pep this joint up a little.  I made a mobile with some of his toys out of the thingy they hang the IV bags on…much better!  At least now when he is just staring at the ceiling there will be something to look at.  Next thing I know the delivery guy is knocking on my door with a LOAD of balloons and a giant teddy bear.  HOLY COW, I should not even question who these are from.  If you know my Mom, you know she is an over achiever and her motto is “It’s not done ‘til it is OVER DONE!”…and it of course was overdone.  I was worried if I tied the balloons to his bed, he might start to float.  I open the card and just as I suspected…Mimi, Pee Paw & Reid!  Rhett immediately began to perk up.  He was loving these balloons; he began jabbering and laughing at them.  Way to go Mimi!  Rhett’s roommate Nova was quite impressed herself, so of course Rhett shared with her, he is such a good guy!  It is amazing how a simple balloon can make a kid’s day.  A friend of mine from college, sent flowers and it is amazing how much they brightened my day!  Rhett’s room was now officially the best room on 9NW.  Between the Martha Stewart IV mobile, the beautiful flowers and the balloons…this place was starting to become less like prison and more like Rhett’s new home! 

On a side note, I have to tell you about our new friend Nova.  She is 14 months old and on her 7^th surgery.  She has been at CHB this stay for 15 days.  She has Pfeiffer Syndrome.  See link below:

 http://www.childrenshospital.org/az/Site1442/mainpageS1442P0.html

Basically, they are rebuilding her skull, face etc…  Can you imagine 7 surgeries in 14 months?  She spent her 1^st Birthday in the hospital having surgery.  The majority of her life, she has been in a hospital…I couldn’t even imagine what that is like.  The mother, also named Elizabeth, has the best attitude about the whole situation.  They found out toward the end of her pregnancy about Nova’s condition, what to expect and they have just rolled with it.  I wish I could have her patience and calm personality.  This has been torture and she has had to go through it 7 times and most likely 15 more surgeries are in her future.

I am starting to realize just how lucky Rhett really is…

Day 2 of Recovery

I wake up to hear Dr Goumnerova going over the surgery once again with Scott.  She was still quite impressed with what a great job she did & she had every right to be.  She is my hero and as far as I knew, she has earned her wings!!!  So we have started Day 2 off better.  Rhett was asleep, I had gotten a few hours of sleep and Dr. Goumnerova was giving us good news.   This was going to be a great day! 

Rhett seemed to be finally getting the pain under control.  It only took Tylenol, Morphine, Codeine & Valium to do the trick and in a constant flow!  The Nero team did their rounds and said Rhett should be ready to start eating and could make the transition from his stomach to his side and his catheter was safe to come out.   As Jess (Rhett’s favorite nurse) began to pull the tightly wrapped blanket off Rhett and roll him to his side, there was an instant sense of relief.  He seemed so much more comfortable.  We still had a fever, that was continuing to rise, but this seemed to be normal after surgery.  Jess kept a close watch on how high it continued to get, because we were getting close to the “high” end of what they considered to be normal.  Pain meds were continuously pumped into his IV as the anesthetic was obviously wearing off.  Rhett would open his eyes and there was no life there.  He just had a blank stare.  He didn’t look around, he would barely even blink, it was just an empty stare.  You could tell he had no idea where he was or what was going on & by the blank look in his eyes, he didn’t care.   

Rhett had many visitors that day.  The Urologist & Neurologist who performed the Urodynamics test came by to check on him and see how surgery went.  As well as, Sarah his anesthesologist who pried him from my arms to take him back for surgery.

Sarah…poor Sarah!  She probably thinks I am some hysterical crazy lady who needs meds, which sadly isn’t too far from the truth.   She slowly stuck her head through the door as she quietly says, “Hi!  Do you remember me?”  I started to smile and say “Of course, I do, come on in!”  She wanted to check on how I was doing after surgery.  She said she knew I was pretty upset when she took Rhett back and wanted to make sure I was ok and if I was more comfortable with the whole process now that it was over.  She was checking on me?  These people really are amazing!  Where else would an anesthesiologist make a special trip to go check on how a mother was handling her child’s surgery the next day???  I can tell you right now, she needs to give “Sundance Anestheology” located in Ft Worth, Texas a few pointers.  (Side note- if ever delivering a baby at Harris SW…avoid Ms Sundance Anesthesiologist Extraordinaire, she is stingy with drugs and refuses to give them out…even if you beg.) 

As the day went on, Jess would rotate him from side to side, each time he would roll, he would just scream out in agony.  He was in so much pain, and all I wanted to do was just scoop him up and hold him.  Apparently, Jess is not only a great nurse, but she evidently a mind reader because next thing I know, as we were chatting about Rhett and his whole life story, she is picking him up and asking if I want to hold him.  “What?!?”  Scared wasn’t even the word…maybe terrified is better.  What if I hurt him, what if something started leaking, what if….

“Just sit in the chair, I will bring him to you and we will lay him on a pillow…it will be fine!”  Jess kept reassuring me.  She knew neither Rhett nor I would calm down until this happened.

So I did what she said, we get Rhett situated in my arms & on his pillow.  I was a nervous wreck.  I think I sat there holding him perfectly still for over 4 hours.  Both of my legs and arms were numb, but I didn’t care.  I was so happy to finally get my arms around him; I would have sat in that chair forever.  I would like to say we were both so peaceful and happy, but that wasn’t the case.  Rhett was finally at peace and slept better than he had since being put under; I on the other hand am surprised he didn’t wake-up from me nervously shaking. 

When Scott finally got back to the hospital that night I was giving him a recap of the day and going over all of his visitors.  We both could not get over all of the doctors that had gone out of their way to check on Rhett, when they didn’t have to.  The nurse’s even commented on his visitors and said Baby Rhett clearly charmed everyone he has come in contact with while in the hospital…I agree, he is a charmer!  I think it is the cheeks…how could you not love the cheeks!!!

That night, Scott decided to stay at the hospital with Rhett, so I could get some sleep and that is exactly what I did.  I slept for 8 hours that night and I couldn’t tell you the last time I had slept so well.  FINALLY, I had some peace!  Rhett seemed to be doing better, the surgery was behind us & everything seemed to be falling into place.

Top Things I could not live without on this trip:

1.      Family & Friends helping to make this whole experience easier

2.      Awesome Nurses/Staff of CHB on 9NW taking care of Rhett

3.       My Mom making sure I don’t have to worry about Reid

4.       Reid…so glad he is coming to Boston with Jeff and Matt

5.       All my Vera Bradley...those bags have more compartments/pockets than I have things to stick in them

6.       Claire Pettibone...if you don't have any, go get some!

7.       Remote start on the car...it is a lifesaver when it is freezing cold

8.       My Laptop...a girl has to keep up with life outside of the hospital

9.       ABC.com....when there is no DVR, this is the next best thing

10.   The bottle of Malibu Rum Nichol sent with me for when the going gets tough...the tough get hammered (just kidding...I haven't opened it yet.  When I finish my blog, you will see what I am saving it for) 

The Road to Recovery

“Rhett is waiting for you in recovery…” was all I heard the nurse say as I was making a run for it.  I had no idea where I was running to, but I was on a mission to see Rhett and we had to get there fast!  I grabbed Scott’s phone and threw it on the table as she was going over the phone rules.  If he didn’t have the stupid phone, we couldn’t break the rules…so problem solved.  As I was speed walking to the recovery room, the nurse was preparing us for what to expect.  Yeah, yeah, yeah lady I know the drill; extremely pale or extremely red coloring, swollen face…I got it, let’s go, let’s pick up the pace.  We finally get to another “pit” and there he was…there was my little pale, swollen faced baby.  He was out, and by out I mean he has checked out for the week…please hold all calls until further notice.  I was so happy to see him…and I was thrilled everything went smoothly.  We stayed in recovery for about an hour or so to make sure he was coming off the anesthetic properly and then we made our way to his new home for the next 4-5 days. 

9 North West was our new home.  When keeping up with the stories of kids that have been/are being treated here, they always have a wing they brag about and how wonderful everyone is on that wing.  I always wondered which wing I would be bragging about…I finally had a wing.  We arrived on floor 9 which is the Neurology Floor for inpatients.  Some wild things take place on this floor (sleep studies & medically induced seizures to name a few).  We made our way to the North West wing which is the home to most surgical patients.  As soon as you get off the elevator, you know this building is all about kids…the hallway was adorned with animal balloons for each room and windows painted brightly with Scooby Doo, Shrek etc…  Rhett’s room had a tiger balloon tied to the entrance, which for him could not have been more perfect.  We get him settled in, and all of our junk put away and made ourselves at home…after all we weren’t going anywhere anytime soon.  My Dad finds the ESPN on the TV and bam…everyone was comfortable.  I think it only took about 5 minutes for us all to be passed out…it had been a LONG DAY!

After we all took our short little nap, Rhett’s Nurse was getting us up-to-date on how this whole thing worked, and she wanted to show us Rhett’s dressing and what it should look like and when to be alarmed.  I don’t know what it was, but when I saw the dressing, what had been done to his back hit me; I felt a huge rush of panic.  I was suddenly hot & queasy, I just knew I was going to puke…I can’t handle seeing my baby like this.

Wednesday night, I was getting settled in to spend the night with Rhett in his room.  I had my little bed made with my favorite blankie from home and my special pillows so I would be nice and comfortable…all I wanted was SLEEP!  YEAH RIGHT!  The first night was horrible.  The pain had finally set in and Rhett was definitely feeling it.  He would wake up and just scream out.  He was confined to just being on his stomach and he was no happy about it.  He didn’t want to eat which isn’t unusual, and began to spike a fever.  Morphine and Tylenol were the first drugs they began pumping in him which didn’t seem to do anything…next came the Valium.  He had to wear a little cast on his arm to protect the IV that had taken several sticks to get in…they didn’t want to take any chances of losing the IV in case something happened and he needed to be rushed back to surgery.  It was also the only way of getting meds in his system…and he needed the meds.  Heck, let’s be honest here, I needed the meds…hook an IV up to me!  He was on a constant rotation of each of the three drugs and maxed out on the amount he was taking and how often he could take them.  Managing his pain was the number one thing we had to accomplish that night and we weren’t making any headway.  He was hurting and had no clue what was going on.  The one difficult thing about babies recovering from surgery is that you can’t reason with them.  I couldn’t tell him what was going on and the more he moved the more it hurt.  Finally, the nurse basically strapped him down with a blanket.   She wrapped him as tightly as she could and tucked it into the mattress to keep him still.  If he wasn’t swinging that heavy cast around he was arching his back and then he would just cry out…I would just stand beside his crib and hold his little hands trying to comfort him.  There is no feeling that is worse than your baby being in pain and there is absolutely nothing you can do for him.  I couldn’t pick him up…I couldn’t do anything.  He didn’t know where he was or what was going on, all he knew is every move he made hurt him beyond belief, and his Mommy was just standing there.

It was 5:30am before he finally calmed down and went to sleep.  I crawled into my bed and passed out. Next thing I know, I hear Scott walking in the door at 6 to meet with the surgical team for an update.  It was all I could do not to scream “Keep it down…do you know we have gone through to get everyone asleep???  Take it to the hall folks!”  Next thing I know, I am waking up around 9 or 10 who knows what time it really was to Dr G giving Scott another update…

Rhett's Surgery

So, it was finally here.  The day we had unexcitedly been preparing for.  Neither Scott, nor I slept one wink that night.  Rhett on the other hand, slept “like a baby”.  The alarm went off at 5:00am.  I just laid there…maybe if I just hide under the covers the day will pass me by and we won’t have to go.  Scott put Rhett in the bed with me and kept telling me we had to get up and go.  So I did what any adult mother would do, I held Rhett as tightly and closely as I could and refused to go.  Scott just looked at me like, “oh crap here we go again”…and oh yes, we went there… again.  I started crying and I was serious business, I was not getting dressed, I was not getting in the car and I WAS NOT TURNING MY BABY OVER TO ANYONE.   We had a hostage situation.  Scott did what Scott does best, he very slowly and carefully moved away from the situation without any sudden movements.  He knew from past experiences, any sudden movements or loud noises could cause a riot and he has been trained intensively on how to react in these situations.  He told me he was going to pick up my Dad from his hotel and he would be back to get us and he quickly bolted for the door.  So I sucked it up, released my tiny hostage and got with the program. 

We arrived at the hospital, got checked in and they called us back.  We went to the pre-surgery holding area, which basically looked like “the pit” on Grey’s Anatomy.   I do need to add the funniest part of the whole day, the Nurse Practitioner went to put Rhett’s security bracelet around his ankle and it was too small.  My Dad was quite amused by Rhett’s little tree trunk leg.  I was hoping the surgical gown they had waiting for Rhett would fit or we would never live this down.  Scott and I dressed him in his new little outfit, which for once was too big.  By this time, the fact that he had not eaten in awhile had started to sink in.  He was looking for anything he could get in his little mouth that had any sort of taste…so what does he grab???  His toe of course!  He was sitting there sucking on his toes, and would look up at me like these things have no taste…is this all ya got Mom?  We did everything to entertain him and finally I passed him over to Scott and he gave up and went back to sleep.  The surgical team started to come over and introduce themselves, go through what they would be doing while in surgery and answer any questions.  We spoke with Dr G and she assured us this was going to go perfectly and not to worry.  We signed our life away and it was all coming to a head.  My stomach sank…I knew what was next, relinquishing my tiny baby to them.   Dr G finished going over everything and said she would see us after surgery.   The anesthesiologist team came over to get Rhett and take him back.

WAIT…what?  No, we aren’t ready yet!  There is no way I can even describe what this felt like.  I knew I would never officially be “ready” for them to take him back, but I needed more time.  Here we go yet again…the tears start pouring down my face, the anesthesiologist holding Rhett was a young, sweet girl named Sarah.  Sarah turned back cradling Baby Rhett, trying to be as nurturing as possible to him turned back and asked if I wanted one more kiss. 

So I got my last little kiss, they took him away and as the doors closed behind them I was hysterical.  All the “What if’s” that had been running through my mind for the past several months, were getting louder and faster.  Handing your sweet tiny baby over to someone and not knowing if they are going to bring him back is the worst feeling in the world.  What if something happens?  What if he goes in there and comes out a completely different baby?  What if he is allergic to anesthesia?  What if they get in there and it is worse than they thought?  What if he doesn’t wake up?  The “what if’s” went on and on and were beginning to get ridiculous.  “What if the Dr has a heart attack?” We went into the Family Waiting Area and I was prepared for a long day.  We were originally told to expect the surgery to last 8 hours.  So I just knew by the end of the day, if I continued on this path my head was going to explode from all the noise. 

It was too late any way, they had already taken him back and whatever happens at this point is out of my control.  So we now all I can do is wait….and wait…. and wait.  The nurse would call in and give reports of how he was doing every 90 mins.  As I was listening to her make her rounds with her reports for different patients, I noticed it was always the same report.  Then I started to think…”Well if it is bad news, it isn’t like they are going to tell this chick and she is going to give us some horrible report.  That is the Dr’s job…right?  She is pretty much giving everybody a standard report.  Then my mind starts up again...

The nurse made her way to us to give us the first report.   “The incision was made at 9:29 am and things are going well.” 

The next report came an hour and a half later and she said “Things are still going great”.

All this waiting was starting to wear me out.  I need a real report…a detailed report…could you just put me on the phone with this surgical nurse reporting to you?  Or send me some sort of picture?  I need a little more detail than “things are going well”.  She was a very nice lady, probably someone’s sweet grandmother, but I wasn’t looking for a sweet lady to feed me the standardized report she was giving all the parents impatiently waiting for their children to get out of surgery.  Of course, she probably wasn’t given any details and I am fairly certain if she did know that something horrible went wrong, we would all be able to read it plastered all over her face.  She just kept her happy little grandma smile.  I decided right then and there someone needed to lobby for stressed out Mommy’s who children are in surgery for this new “Obama Healthcare Plan”.  We need some sort of clause (we can even call it the “Elizabeth Law”) that states:  Any mother/father or legal guardian should be given a menu to choose from that consists of a variety of drugs/alcoholic beverages to calm their nerves while waiting for their child in surgery.  It should be something similar to ordering sushi, where you are given a pencil and a piece of paper filled with different options, you check what you want and they deliver the goods.  My order would have been somewhat of a cocktail consisting of Malibu Rum & Coke…scratch that I need the good stuff, make that Crown & Coke and just surprise me with a narcotic that will blend well with the drink.  And make it snappy!!!   Another 90 minutes passed and our little smiling grandma came bouncing around the corner with that same genuine smile.  “I have good news…” she says happily.  “The sandwich lady will be here shortly and she has a brown bag special for $5 and she will only be here for 5 minutes…that’s not long, so you better get there quickly!!!”  Are you freaking kidding me????  No, I don’t want a stupid sandwich, granny…I want a muscle relaxer …where is the drug lady???  When will she do everyone in this area a favor and show up with a brown bag special?  She would definitely be “good news”…not some dried up sandwich lady.  Seriously!  I felt like ripping my hair out at this point…sandwich lady!  Really?  (See the need for the “Elizabeth Law” that needs to be in this Healthcare plan everyone is so fired up about!)

So finally she came around with our “Rhett Report”.  She told us Dr G. was getting ready to suture him up and she would be up in about 45 minutes to go over surgery with us and then we could go to recovery to see Rhett.  Scott, my Dad and I just looked at each other…that was much quicker than originally planned.  This most likely meant good news.  So Dr G finally comes up and has a a very pleased look on her face.  Finally, some reassurance that this might end well…

She walked up to us smiling and says “I did a phenomenal job!”  It wasn’t cocky when she said it either…she was just stating the facts.  Besides, if she was being cocky…she had every right to be.  SHE JUST REBULIT my tiny baby’s spinal cord and did not paralyze him in the process.  I felt the weight beginning to lift off my shoulder and I could suddenly breathe.  This woman is my hero and a MIRICLE WORKER.  She went over all the details of the surgery, but I will just break it down for you like this:

Basically she got most of the tumor out, while leaving all nerves intact.  She had each nerve on a monitor that alerts her if she gets near it while removing the tumor…and she happily reported the sensors never made a sound!!!!  She freed the cord, rebuilt the end of his spinal cord and everything seemed fine.  His dura (what holds the spinal fluid in) was not damaged by the tumor and only had one small hole in it, which she repaired.  He has 4 layers of stitches to keep everything that is supposed to be inside, inside and things outside, out.  She didn’t think we would have much to worry about as far a re-tethering, but we still needed to keep an eye out and watch for any symptoms.  All in all, she felt she did an excellent job and he would recover quickly.  Next we were on to meet our sweet little baby in recovery.  To Be Continued…

A typical day

So we arrived at the house the hospital provides for families who travel long distances to stay in while their children are being treated at CHB.  We will just say we arrived and the next day we departed.  Luckily we found an apartment off Newbury Street, here in the city.  They had a studio apartment available right then, so Scott cut a deal with them and it was only a little bit more than we were paying to live in the “Hospital Dorm” to now be in a comfortable apartment in a great part of town, so I was sold.  Day 5, move #5…I may never move again!    I have never gotten thing packed up so quickly in my life.  If you didn’t know better, you would have thought I was evading the law.  I could not get out of there fast enough and into my new place.   When Rhett is released from the hospital and Reid arrives in Boston, we will move to a larger apartment…so I take that back, I will be moving yet again, but at least we are moving up!  So after the living situation was squared away and we collected the keys to our new casa, we made a mad dash to the hospital for Rhett’s pre-op appointment.

Once again, we arrive and Rhett is starting to get the hang of how to put on a show for all the nurses and doctors.  He is quite the little charmer!  We were there for 3 long hours, long miserable hours.  The pre-op area is full of fasting kids waiting to go into surgery, so no food or drink is permitted.   Of course when they tell you this, you immediately feel like you will die of thirst & starvation if you don’t eat and drink right then.  The worst part of the day was drawing blood.  Rhett’s veins were too small & the needle was too big, so there was a lot of poking, and moving the needles with no blood flow.  This was bad…this was VERY BAD!   Rhett went ballistic screaming and crying, which makes me start crying.   I couldn’t stand to see what little bit of blood was actually coming out and the fact they were hurting my little tiny baby was way more than I could handle (that and I am a little on edge and extremely sensitive right now).  After we hit the 2 try limit, the Head of Poking Sweet Little Innocent Babies and Making Them Cry (yes, this was her official title) made the decisions to stop tormenting my sweet helpless baby.  I am sure it wasn’t that bad, but Rhett and I were very upset and traumatized by the whole experience.  We finished up going over any questions, exactly what was taking place Wed and what would happen after surgery was complete.  

We check in at 7:00am, surgery is at 8:30 am.  We go back with him to get him settled in his hospital attire, speak with the doctors & nurses who will be in the operating room, sign our life away, answer more questions and then they take him back.  Dr G will identify where every nerve is located within the tumor, she will then remove as much of the tumor as possible without disturbing the nerve roots, cut away the cord, rebuild the end of his spinal cord, make sure the derma (what holds the spinal fluid) is water tight, sew him up and he is off to recovery where his Momma is impatiently waiting for him.  Sounds easy enough right??? 

So Boston being crazy isn’t enough, back home my Mom had a blow-out in my truck, Jeff locked himself out of our house (aka Ft. Knox) twice and Reid is busy “watching Uncle Jason to make sure he doesn’t steal my mommy’s stuff”.  Why he thinks Jason is a common criminal, I don’t know.   This is all in a day’s work…I told you my life was crazy!  I would also like to point out the irony, that I lock myself out of our house on a regular basis and have to call Jeff to come let me in…how funny is it that it happened to him.  They always would laugh at me, because they just couldn’t understand how someone could lock themselves out of their own house…not so funny now is it!!!

So, now we just have to get through this surgery.  My Dad flew into Boston last night, and we will be at the hospital first thing in the morning.  To Be Continued…

On the Road Again...

1950 miles; 30 hours 28 minutes of driving; 8 hours of being stopped for gas, food and dirty diaper disposal; 18 "disagreements"; a few conference calls and we finally made it to Boston.  I did the math, and I don't drive that much in 2 months, much less 4 days.  As we pulled into Massachusetts, I told Scott I felt like I had accomplished something huge and I should be excited about being there, but I wasn't.  I would have rather been home with both of my little boys, living our normal-crazy life! 
Mom came down Thursday to pick up Reid and help me get things packed.  Leaving your 4 year old for this long is not an easy thing to do.  Does he drive me crazy sometimes?  Yes, but I miss my little "Chatty Charlie", as I like to refer to him.  In fact, I think I miss him more than he misses me.  In my defense, he is with my parents, so this means everything I have worked so hard at molding will quickly go down the potty.  What Reid wants, Reid gets, at Mimi & Pee Paw's house, so I am sure it will take me 6 months of damage control to get him back in working order.    I cried like a baby when they pulled out of the drive-way...you would have thought the poor child was going away to war.  I have never been away from my little side-kick this long…we need each other.  He will be flying to Boston after Rhett gets out of the hospital (Nov 11th-Nov 17th) so we won't be separated for too long. 
We left Ft Worth Friday morning and before we had even gotten to Dallas, we had already had 6 "disagreements".  I was pretty sure if this kept up 1.) I would leave Scott somewhere on the side of the road and do this thing myself or   2.) Throw myself out of the car...it could go either way.  We decided we would keep count of these "disagreements" just to see how high this number got by the time we ALL made it safely to Boston.  Lucky for both of us, the "disagreements" tapered off.  We made it to Memphis Friday night, after a long day of driving.  I hadn't been to Memphis since I was a kid, so I was pretty excited about this stop.  Memphis has everything a girl could want...Graceland & Bar-B-Q.  We were headed to Neely's (Down home with the Neely's-Food Network), but the reviews were not so bueno & even the local people said it was over-rated.  We instead went to another BBQ joint recommended by the hotel....holy moly guacamole it was GOOOOOOD!  Scott ordered one of everything on the menu, including BBQ spaghetti & it is a good thing he did.  BBQ spaghetti is a magical experience, if you haven't had it...get in your car, drive to Memphis, go wherever it is we went and get it!  You will thank me later.  If you have kids, feel free to bring them with you, the waitresses will hold them and entertain your children while you eat.  One held Rhett, while the other proceeded to dance and sing for "Boo Boo" as they referred to him.  It was the greatest...dinner and a show!
Saturday morning we hit the road early and it took us ALL DAY to get through Tennessee.  That is the longest state, pretty, but LONG!  We ended the day around 11pm in Roanoke Virginia.  The further north we drove, the prettier the scenery was.  Sunday we did Virginia, West Virginia, Maryland, Pennsylvania, New Jersey, New York and Connecticut.  Virginia and West Virginia were beautiful.  We were surrounded by the Appalachian Mountains and George Washington State Park and just in time for the fall foliage.  Maryland was the beginning of Scott and me trying to remember what we learned in 7th grade history (Mason-Dixon Line, etc).  Pennsylvania was rolling green hills, full of old farm-houses, bright red barns and dairy farms.  I was fired up when we passed an Amish family, along with their horse and buggy cruising down the highway.  Did you know the Amish are offended when you take pictures of them?  I didn't learn this by experience, don't worry.  Thank goodness for internet and especially Google.  We finally made it to New Jersey, which I had been waiting on for days.  I consider myself a "Jersey Junkie" with all the Jersey shows I watch (Housewives of NJ, Cake Boss, Jersey Shore, Jerseylicious, Jersey Couture, you get the point).  I had a few stops I needed to make, first and foremost Franklin Lakes.  I made Scott drive me through this little town that creates so much havoc and drama, and hopefully on the way home we will make it to Hoboken NJ to get some Cake Boss cake...I LOVE CAKE!!!  Then on to New York, and finally Connecticut.  Connecticut is by far the prettiest state I have ever been through.  The towns are so quaint & charming...I don't think anyone who lives in this state has any worries.  Their lives are picture perfect!  We spent Sunday night in Meriden, CT and finished our trip Monday as we pulled into Boston a hour before our appointment.
Rhett had an appointment to do the Urodynamics Test today, which basically gave them an idea of what damage has already occurred.  The test measured what kind of control his bladder/bowels had and if there was any damage to either of these, as well as what kind of nerve function Rhett had below the waist.  We went directly back to the procedure room where several nurses were preparing "the study" as they referred to it.  By the time the test was underway, there were 8 people in the procedure room including a neurologist, urologist, and two pediatric doctors from Mumbai.  A catheter was inserted, and an electrode (aka large needle) was put in place to measure nerve function and muscle control.  Long story short, Rhett has full control over his bladder and bowel for now, and no nerve damage was detected.  This is GREAT NEWS!    As Rhett would react to different things, the nurses would get more and more excited at how well he was doing.  He had his own fan club, it was very sweet.  They all fell in-love with Baby Rhett and his famous cheeks.  Scott and I were laughing because each time one of the doctors came into the room they each would tell us we needed to take him to Hollywood because he was so beautiful.  Either they were really in-love with our perfect and precious baby and could see what I have been saying all along, or they were just blowing smoke up our rear…either way I felt better.  Apparently, little blonde babies are few and far between up this way…especially babies with little squishy cheeks!
After the procedure was complete, both the Urologist & Neurosurgeon sat down and spoke with us about the results and their opinions.  Both doctors could not believe how strong Rhett was.  They both agreed that for a child his age with this condition, it was amazing he had enough strength & control to stand on both legs, sit up on his own and could not believe he was on the verge of crawling.  The neurosurgeon said he would have never diagnosed Rhett with a tethered cord if he had not had the bump on his back.  Thank goodness for the bump!!!  His left leg is slightly slower than the right, but this wasn't anything they seemed to be concerned with for now.  Boston Children’s is a Harvard Med School hospital, so they research this condition extensively.  We sat down with both doctors and went through 100's of questions pertaining to both sides of the family.  They believe this is a genetic condition, so we were told that anyone of our brothers or sisters would need to take precautions for future pregnancies...basically, needing to take 10 times the normal dosage of folic acid.  After answering every question imaginable we were told they felt Rhett would recover from this surgery with no complications and we would just need to keep an eye on him watching for sign of possible re-tethering, and we would be back in 3 months for another urodynamics test to see where we are after the surgery.  So Day 1 was successful and we left there with great news and relieved that was no nerve damage so far!!!  YEAH!!!!  Next on our list, check into our new digs while Rhett is in the hospital.