Rhett just made another trip to Boston in March for his follow up with Dr. Goumnerova and more tests.  I will post the results soon!  Here are a few pics of his life in the hospital before and after surgery in November 2010.






Boston Children's Hospital









Honeywell Building.  The original building, now Doctor's offices.







After a long day of pre-ops.

 Pee Paw flew to Boston to be there for my surgery

I was so hungry before surgery, even my toes looked tastey!

Right before surgery, in his little hospital gown with his best buddy Mac the Monkey!
Here are a few pics of his back pre-surgery.  You can see the dimple and right under it, slightly to the right, you can see the tumor.

 

Rhett in Recovery

 

Rhett's bandage

This is Rhett just after surgery in recovery.  His face was pretty swollen from the anesthetic,
as well as being face down for 7+ hours.  His bandage covered most of his back, you can see
the top of it near his shoulders.  Mac went back to surgery with him and was waiting for him
as well as his favorite paci, when he was finished! 

 

Day 2 after surgery

Moved from my tummy to my side

Mommy & Daddy were so happy to FINALLY get to hold Baby Rhett!
Rhett was pretty excited himself.  We were both scared out of our mind we might hurt him!

Day 3 Moved from my side to my back

Mommy made a mobile from my favorite toys, for me to look at 

A few special deliveries from a few special people!  Pee-Paw brought me a polar bear. 
Mimi sent me  100 balloons & a giant teddy bear.
My good friends Mark,Cooper, Parker
& my Fairy Godmother Auntie Nichol, sent a cuddly teddy bear and sent
Mommy some yummy cupcakes!  I also had beautiful flowers and
so many cards to brighten up my hospital room!



Playing in my crib 

They bring me new toys every day!!!

The nice lady in the cafeteria made butternut squash for me and anything else I wanted!  No baby food for this kid!

Today they want me to sit up, but I
think I would rather try out crawling!

Hey guys!  Look what I can do!!!  Can I go home now?

Is there any question why I was the nurse's favorite?  They loved to take me on their rounds and for strolls around the hospital!

Daddy & Rhett enjoying a little football on tv.

Mommy & Rhett Henry getting ready to go home!!!  Well, almost home...to our Boston home anyway!  Mommy was so grateful for all the wonderful nurses and hospital staff at Children's of Boston!  9NW will always hold a special place in our hearts!  We could not have survived any of this without them and all they did to make this experience much easier!


Packed up and ready to blow this joint!  Leaving the hospital after 5 long days.




Our Boston home for a month. 




My scar a week after surgery.  It was about 8 inches long & still makes Mommy cringe when she sees this pic.
This was right after Dr. G pulled the bandage off at my check-up.



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…