Fire in the Hole!

After the drama subsided from our room situation with the Cough A Lots, we were finally able to relax a little. Parker had been exposed to who knows what, so I was not happy. Once everything settled down I had the opportunity to snuggle with my baby and really look at him.

I took one really good look at him square in the face and I instantly see something wrong with him.

I ask, "Why is his ear like that?"

Casey looks at him and doesn't notice anything. He sighs and just gives me the "Caitlin you are seriously losing your mind look, but I don't dare say it out loud face".

"Casey look at his ear! It is inches below the other one. They are not symmetrical," I say!

He says, "Oh...oh...ooooooooh....His ears resemble Slough from the Goonies...".

"Don't ever say that," I yell-of course trying not to laugh because it was very true.

As you can see in his picture his ear is sticking out and VERY different from the other one. I send a picture to the person who can descalate me faster than a Xanax. My dad. He says, "It's cute and to carry on. Who cares if his ears aren't even?"

True. Thank you for that does of reality as always dad! He does not react and is amazing in crisis situations.

Then I notice that his soft spot is very, very different. Prior to surgery and even prior to being admitted into the hospital his soft spot was still concave and that was our "normal" baseline for him. Now it was lined up with his bones. That would be normal for a child who didn't have a huge head. Not for Parker, though. No more swimming pool.

Cue panic...!

The nurses come in as I am panic central. Casey was about ready to call off work for another five days since I was clearly losing my mind. Again.

"Call the doctors. Seriously call the doctors! His shunt is not working," I scream!

They look at Parker and say, "Well, he looks okay."

Seriously I realize that he looks "okay", but I need to know if this is his new baseline meaning, no more pool. Wait, what do you mean he looks okay? Do you not see his ears? I realize you people see  a lot in your day, but cmon'! This is not normal.

Just at that moment our favorite Neurosurgeon (in training) in purple crocs enters the room to see how his favorite patient, Mr. Parker, is doing. Poor guy.

"I am FREAKING out" I scream!

He asks, "What's going on?"

"First of all, look at his ears. Problem numero uno, Doc. Second of all, he no longer has his pool. The shunt is NOT working. Clearly, Just look at him," I state.

He gets out his handy dandy wand to check Parker's shunt settings. After checking he proves to me that his setting was exactly where it should be. "See here look, he says."

I reply, "No. I don't care. It's not the same. WHY is it not the same?"

Casey was more polite than I was and humored the doctor by looking at the setting. Sure didn't get up and look at it. I was ticked that he even assumed I didn't believe him. I believe you, doctor, I just want you to explain to me WHYYYYY it looks different and if this is what I should look for in the future.

Not that hard, right?

He couldn't answer me; going on and on about how the pressure setting was correct and the Shunt Series (x-rays and scans of his shunt in head and belly) were all normal. The doctor honestly was talking in circles about how Parker needs morphine and the nurses told him that I said he couldn't have any. It's not that Parker "couldn't" have morphine, it's that he didn't need it. I  allowed the morphine was Parker was admitted into the ICU and had the ventric put in. I won't watch him in pain. Tylenol was doing the trick. I am not into drugging my 4 month old and making him sick from morphine when he doesn't need it. Let's be real. He left after I refused to listen to him.

The nurses remained in the room and I said, "Seriously the fact that he wants to drug Parker has nothing to with the fact that his head is CLEARLY different. Please explain to me how morphine solves any of our problems today?"

They replied, "It doesn't. We are sorry."

Parker's nurses were fabulous and I could tell they were just as confused as I was about the situation. Parker was playing and laughing. He wasn't in pain. I will go on record as saying I do not expect doctors to know the answers to all of my questions. Especially doctors in medical school. However, if you do not know the answer then tell me that. Then go find someone who does. That's it! Sure has been the standard practice where-ever I've worked.

A little while later I am still concerned as all get out and I was deterring myself from a nervous breakdown by partaking in the biggest time waster ever created - Pinterest. I was busy planning dinners that I will never cook and rooms I won't decorate when I see Parker's surgeon enter our room.

I slam my phone down and state, "Thank GOD you are here!"

Clearly our friend in the purple crocs tattled on me.

He looks at me and walks over to Parker. "What's going on? He looks fine...look at him."

"You know doctor that's exactly what I've been doing all day and he does not look fine to me," I said. "Look at his ears and his soft spot. It's very different."

Soon after Casey, the nurses, doctor and I surround Parker in his crib. We are listening intently on what the doctor has to say. He explained to us that his ear was uneven because of swelling. After all, the shunt didn't go in easily. He then says that after the resident doctor came in, he went and chatted with him and said I was upset. NO <insert sarcasm>! The surgeon took the opportunity to re-examine at the scans and assured me that everything was in it's place and all was well. However, there was one small issue...

Parker needed to poop!

There's something they don't teach you in Hydro Mom school! If your child has Hydrocephalus and is constipated, it will affect the pressures in their brain, thus causing their soft spot to raise. He told us that parents bring their kids into the ER all the time because their shunts aren't working and turns out, it's because they are constipated. Go figure.The doctor could see Parker's, ummm...back-up in the scans.

Unfortunately this is not a new issue for Parker. The baby hates pooping. In our case it's obviously a little more serious than the average kid. Needless to say it's a celebration every time Parker poops. I mean, get the ice cream cake from Dairy Queen and hang up the streamers. Parker pooped! YAY!  Parker is a baby of many poops ranging from knuckle deep in poop, to thick, clay like poop we refer to as, "Clay Aiken" poops. Pooping is such a big deal at our house that Casey will ask me daily while he's at work.

"Did Parks poop today?"

"Yeah, we had a Clay Aiken," I say.

I took a sigh of relief and told Parker if he didn't knock this crap out he was going to drive me to drink.

"Oh come on Parker don't do that to your mom." the doctor says!

Looking back this was one of those times where I had verbal diarrhea and shouldn't have admitted my son was giving me a potential drinking problem...in front of his doctor and nurses. Oye.

Parker was given two days worth of "please poop pills" and still hadn't gone. I swear this child hates to poop. Right as we were supposed to be leaving he decided it would be a good idea to go poop. Thank the Lord.

Resident doctor in the purple crocs never came back into our room. Casey said I should apologize to him for being crazy and I did plan on it, but for some reason, he never came back. Then sent in the surgeon every time after that. Clearly not his first rodeo in dealing with crazy train moms.

I am woman enough to admit that this was the first time I was wrong. Parker's shunt was working. He pooped and was healing well. Now we had to await for a visit from a very important visitor-Physical Therapist. Parker's flat head was giving him some issues and this was a visit we were very, very anxious about.

Introducing Mr. & Mrs. Sir Coughs A Lot

Parker had to remain in the ICU the night of his surgery. It always feel like a million pounds has been lifted off my shoulders when they transfer him out of the ICU. Granted, he's still in the hospital, but the regular Pediatric inpatient floor is way more relaxed and the sounds are different. Instead of all the intense beeps you hear kids playing and even laughing. After dealing with all the "heavy" for three weeks it was a welcomed change of scenery. We journeyed our way out. Nurses and doctors said, "See ya later Parker!"

Um. No. Let's not plan that. So I say, "No offense, but I am not in a rush to see ANY of you any time soon. If I see you please let it be in an aisle at Super Target, cart full of cosmetics and Starbucks in hand."

They agreed.

Ironically we were taken to the same exact room we were in Shunt Surgery #1. The nurses commented on how cutie cute Parker was and went over their plan of attack. At this point we knew we would continue the hospitalization for 3-4 days. So, it was time to make ourselves comfortable in a new room...again.

Weekends at the hospital are my absolute favorite. It is literally a ghost town. No one is going there for appointments or scheduled surgeries. Because of this the nurse let us put little Parker in a stroller and walk around. I pushed his IV pole and Casey pushed the stroller. Our little angel was having the absolute time of his life walking around the hospital. Keep in mind he had been in a hospital bed for weeks at this point. So to see him sitting up, ventric free, was enough to put us over the edge with happiness. He was LOVING it and we were loving it. For a second I think we forgot our situation and we were enjoying being together. We laughed and went through strange corridors in the hospital. I have to say, it was...fun.

Of course the few passer by's looked at us sympathetically. It's definitely hard to not stare at someone who has a 4 month old baby hooked up to IVs and bandages all over their head. I get it and it doesn't bother me anymore. Just like when people stare at Parker's shunt or scars. I get it. It's strange.

It doesn't bother me...

It can't bother me..! 

If it bothers me it will bother Parker and I don't want him to be embarrassed or ashamed of his scars. He is fighting quite the battle and he deserves to wear those scars proudly. Plus, as I've said before, he will come up with the most ridiculous of all ridiculous stories as to the origins of these scars. Not to mention if his shunt takes successfully this time, his hair will more than likely cover it up anyway. It will be up to Parker to share his story. I sure hope he does because it's one heck of a story!

When we got back to our room I realized that they had the other side set up for another baby. In my head I was thinking, "Well this is a double room, but surely they won't put anyone in here with Parker's risk to infection..." Last time we had this room we were alone in there the whole time.

Wrong. Next thing I know they are carting in an infant Parker's age and AN ENTIRE FAMILY. Here we are folks. Let me introduce Mr. and Mrs. Coughs-A-Lot.

I ask the nurse, "I thought Parker was supposed to be alone because of risk of infection?"

She says, "Oh I didn't see anything in his chart. Let me check."

Cue Jeopardy jingle.

Again...

And again...

By this point the family had everyone in there, including their fourth cousins. She came back in and said that he was okay. I was immediately annoyed, but decided to put Parker down for bed so we could grab some dinner. At this point most of the visitors next to us had left leaving just the infant's parents behind. Parker fell asleep and we grabbed dinner in the cafeteria.

When I get back the first thing I notice is that Parker had managed to rip off his bandages covering his brand new incisions. He had ripped it off and was playing with it. Hmmm...wonder how long it's been exposed to the Cough-A-Lots?

I went and found the nurse who was, I have to say, rude. At the end of the day they are staffed so thin in the Pediatric unit. There really aren't enough of them to go around and this poor nurse was running around like a chicken with her head cut off. However, we are here for an INFECTION and the last thing Parker needed was an open wound to his BRAIN.

She gets to us and calls the Neurosurgeon on call and he tells her they are about to head into emergency surgery and she'll have to do it. So, she comes in like a flash of lightening and does her best. Then she applied Bacitracin, or Neosporin. I say, "The surgeons never put Neosporin on his incisions before. I think it's because it makes it easier for Parker to rip them off."

Ready to rip my head off for telling her how to do her job (can't say that I blame her to be honest) she says, "This is what they said to do."

What do you know, less than 5 minutes later Parker ripped them off. Again. I am dead serious when I say I have never seen a surgeon put anything on his wounds when they bandaged them. No clue who told her to do that.

To say my blood was boiling at this point is an understatement. I found the nurse and said, "Parker ripped off his sutures again."

She then looks at me and says, "Oh this is going to be fun."

Really. Tell me more about how much FUN this is going to be. Please tell me because when we are here again in three weeks I will know exactly why and fun will not describe the situation.

I look at Casey as the Coughs A Lot family is in full force and they have another round of visitors coming in. I ask the nurse once again if it's okay Parker is in there and she says the curtain will separate us. Words cannot describe my utter amazement and disappointment. We came SOOOO far and to have it ruined in less than one day was extremely frustrating. I could not leave Parker that night. There was no way I would leave that room to have him rip off his sutures and not be checked on AND have these strangers in his room well past visiting hours.

So I pulled up a recliner next to his crib and proceeded to hold his little hands down all night. Our friendly neighbors' visitors did not leave until after 11PM. Did I mention they had a toddler? Yeah, toddlers are SUPER fun at 11PM. Around 1AM the poor infant starting coughing uncontrollably. I mean the poor little thing was coughing so bad that they had to call doctors to come in. The doctors came in and for over a half an hour that poor baby coughed. They couldn't get her to stop. It was definitely a bad situation and I couldn't help but over hear all that was happening. She was coughing up blood. The doctor says, "She must have a virus or infection."

OH THAT IS GREAT. FABULOUS ACTUALLY.

At 4AM Casey text me and asked if I was asleep. Nope. Not a wink. FML.

He came down promptly and took over. At exactly 6:30AM I get a frantic text from him saying that Parker was freaking out, Coughs A Lot Family was coughing A LOT, and he had pushed the "Help Button" 5 times and no one was coming. So I make way down there and check on Parker. Casey had since gotten him to sleep. Knowing he was safe and sound I go on a hunt for a nurse.

Crazy was my mood and I think I portrayed that mood accurately with my appearance. Bags under my eyes, hair a frazzled mess and Lord only knows what I was wearing. Looking back I hope I at least had on matching shoes. Doubt it.

I see my first unsuspecting victim. "Excuse me, are you Parker's nurse today?"

She replies, "No I am not. I can go get her for you in a couple minutes."

"No, you need to go NOW. I am VERY upset", I reply. She scurries off and I wait right where she left me. A nurse approaches me and tells me that she is one of two nurses for Parker that day. Oh that's interesting. TWO nurses today. Figures.

Cue verbal diarrhea.

"I am very upset and to be honest with you I feel like my son is not getting taken care of in this facility. Which is rather unfortunate seeing how we've received exceptional care up until this point."

She takes one look at me and digests my words. "Please come with me in this room" she says. Clearly the tears streaming down my face and raised voice is bad for business.

Smart choice. Lock the angry mother in a room.

She sits down and I just start crying my eyes out.

"Tell me what's going on. What has made you unhappy?"

Where do I begin. Oh you mean just this visit not my life.

I explain to her how we've come so far and we've been here literally a month. I talk about the Cough A Lot family. They cough literally all the time and use the patient restroom when it was a very clear rule to us that it was only for patients because it's sick to have adults use restrooms where kids are sick. HELLO. I explain that they had visitors until after 11PM. Then I go on to explain the sick baby that vomits blood and will without a doubt get my baby sick, and I ask her why the heck did we share a room to begin with. Explaining to her that up until this point we had to keep every single person away. We had been put through the ringer and I cannot even begin to explain how hard it was to keep people away and the anxiety it created for my husband and I. No one was allowed to see Parker and we were told to isolate him when we got home.

Why are we the ONLY ones making sacrifices here? I sure unleashed because to be completely honest none of what had transpired made any sense to me. She asked me what I wanted and I said. "I want our own room. This is ridiculous. Those people are coughing and puking up blood. I'm sorry but your super amazing curtain wasn't super enough. I heard everything that went on last night even though I didn't want to. I know that baby is sick and I know that Parker could get what-ever the heck she has and I am NOT HAPPY. We need a private room, even though the damage has been done."

Whew. got that out. She nods. Oh wait I have more to say.

I go on. "Also, I do not want you to say a word to Mr and Mrs Cough A Lot. Though they are the worst neighbors I've ever had at a hospital they are clearly going through a horrible experience with their baby and they don't need this drama. I want our sh*t packed up and moved without a word uttered to them. I refuse to create drama for a family that is going through hell."

She looks at me. Obviously taking a second to digest everything I've said.

She replies, "I will talk to the the charge nurse and see what I can do."

Nice attempt, but not good enough.

"We will have our own room. Anything less is unacceptable. I want to be completely honest with you and tell you this experience has been horrible. In fact, every single time we are on this floor it's horrible. For such a reputable hospital this floor does not offer the care for my son I feel that he needs. If he needs more care then maybe we don't belong here. At the end of the day I literally feel like your staff is not going to care for my son and I cannot trust any of you if I leave him. That is how I feel. I feel...like I can't leave him. I get that he needs more care and he has busy hands. He is a baby. If you can't handle it then we don't belong here. No matter what it is very clear that we need to be moved."

That hit home with her. Clearly we cannot be the only people with a baby that has busy hands and risk for infection. Luckily Parker has parents that can be with him. I do not expect them to sit there and watch Parker, but I can promise you that he was not checked on the entire night. That doesn't even bother me so much as having the family next to us exposing him to germs. If Parker was going to be exposed to germs we would have gladly exposed him to our family who was dying to see him.

"I understand everything you are saying. Please go back to your room and I will be right there", she says.

I go back to our room and tell Casey that I had officially fallen off my rocker and turned into the crazy person I would normally poke fun at.  I wouldn't say that I let her "have it". My delivery of concern was tact and professional-definitely stuck to the facts of the situation. I know it wasn't her fault. She wasn't even there when this all went down. It is completely out of character for me to speak up about anything. I do not like drama in any way, shape or form. Do not want drama in my life and if it presents itself, then I am more than likely done with you on a personal level. So, to put on my big girl pants and confront my issues was a huge step for me. Parker is really bringing out a strength in me I never knew existed. He is my whole heart.

Less than twenty minutes later she was accompanied by another nurse and they packed Parker up and we were moved to our own room.

Those two nurses ended up being some of our favorite during our stay. She listened and understood me. Turns out, she remembered Parker. She was his nurse the day we were discharged, shunt #1. A new mother herself she completely empathized with my plea.

So that was the day I went crazy. Totally worth it.

It All Comes to This

After pleading with the ICU pediatricians and nurses they agreed to hold off the no food rule for Parker as long as they possibly could. Luckily, for us, he slept a majority of the morning and it really wasn't that bad. Also, as luck would have it, the surgery ahead of Parker's got cancelled so he could have gone in a lot earlier than he did. But...we fed him. Oh well. That's our luck.

Ahh, yes, surgery day. The dreaded day of our entire visit. As I've said before, it's not like I didn't know this day was coming. After all, it was the day we were working for all those weeks. Parker was doing so well that we felt bad putting him through surgery. He was eating, laughing, and talking up a storm. Let's not forget his newest addiction to TV too. I mean, the kid, was living it up in the ICU like he was staying in the Presidential Suite at the Ritz Carlton. I had a tremendous amount of guilt looking at that happy baby knowing that in just a couple short hours he'd be in surgery.

I did not sleep a wink the night before his surgery. Anxiety was full force. This time was worse than the others because I had so much time to think about it. The other surgeries were emergency surgeries and happened so quickly.

You know what I do with extra time on my hands. I think. I think a lot.

I was perched up on a fancy high swivel stool sitting next to Parker's crib when I saw the two men in purple walking down the hall. Thank goodness for those glass doors.

Cue panic.

"They are coming, Casey. They are coming to take Parker."

He just looks at me. A serious expression spans over his face.

Parker is 110% content in his crib. He didn't have the slightest idea what was going on. Immediately I look at him and tears sting my eyes. He then gives me his ever famous pout face. Parker knew that Mommy was upset so I quickly pulled it together for my son. Parker does not need emotional people around him right now. He's definitely at the age where he can sense it and he gets super upset. So, needless to say, this extremely emotional Mommy now saves it for the shower. The Anesthesiologists came in and conversed with Parker's nurse about his vitals, which at the time, were all stable. Everything about him was stable, minus the brain cord sticking out of his head.

Then they move to him, forcing me to move from his side. They start asking us questions about his history with anesthesia and reactions to different medicines. Sadly, we have history to share with our extremely young child. I looked over at the clock and could hear it ticking as the minutes passed. I didn't have much time left. Everything happens so quickly right before surgery.

The Anesthesiologists tell me that they will take good care of him. Hmm...Never heard that before. Then they look at us and ask if we want to say good-bye.

Say good-bye... terrifying actually. It then becomes all too real.

Casey does so strongly. Then it's my turn. I walk up to my baby boy and kiss him on the forehead. He makes eye contact with me and puts his little hand up for me to hold. I kiss his hand looking at those beautiful baby blues that he got from his Daddy. Could this be the last time I see my son? I refuse to say good-bye, but tell him, "I will see you later. You be a big boy and don't give them too much trouble ya hungry beast."

The Anesthesiologists chuckle at my beast remark because they clearly do not know Parker.

He didn't stop looking at me until they wheeled him away.

Time suddenly stopped, but I could still hear the clock ticking. Ironically, it didn't seem to be moving. At this point the only thing moving was the room. I was dizzy. Dizzy from not eating and dizzy from the surge of anxiety I got when they took my angel baby away from me.

Casey and I sat in silence. I walked over to grab the Kleenex box and handed him tissue not wanting to interrupt his somber moment. I then sat back on my stool watching the hallway. Waiting for my sweet angel to come back to me.

Over two weeks we had been there. A majority of that time we weren't allowed visitors so it was just Casey and I with our separate set of emotions. There is always a guarantee to have one thing in common and that is the genuine concern for our son. During this time we both had our turns at being crazy. I took my crazy out mostly on objects. For instance, the lovely rented laptop I used that refused to let me use the "a" key or "tab". Just know that every blog I illustrated in that darn hospital was not without choice words, courtesy me.

Sitting in Parker's ICU room, without his crib, was sad. Families walked by and looked at us through the glass door. Some of the mom's I even recognized. New moms looked in the room terrified. Why are those people sitting in an empty room? Where the heck is their kid? I can only imagine the thoughts that were running through their heads because I have been in their place before wondering the same thing.

After a while the nurse came in and gave me a hug and assured me by the afternoon I'd be feeding Parker, snuggled together. Silently Casey and I pick up what was our home for over two weeks. We looked through cards and other gifts. Some from family and friends and some from complete strangers who wanted to brighten our little angel's day. We are grateful for each one of them.

In situations like this you want so badly to believe people, but being a realist (and I will admit at times a little negative) I can't think that 100% everything will be okay. The unknown will kill you. It kills me. The unknown is absolutely what wakes me and keeps me up at night. I will continue to live on pins and needles until Parker catches a break and is hospital free for a couple months. Until then, I am rather skeptic and on edge. As one of my wise uncles said to me, "One day at a time." He is all too familiar with this sort of stuff. He gets it.

Eventually Casey and I go for a walk on the floor. We choose not to venture too far in case our sweet angel came back. Eventually we made our way to the roof top retreat. Doctors and patients are soaking up the rays. Helicopters are coming in and out steadily. We sat there for a good ten minutes before realizing that neither of us were in any mood to sit on a roof and soak in some Vitamin K.

We went back to Parker's empty room and waited.

And waited some more....

...and some more.

Finally I perched myself back up on my fancy swivel stool so I could spy into the hallway. My nose was stuck in my Kindle reading the same stupid page 100 times over. Last time the surgery was done our nurse came in and told us Parker was on his way up. At this point it had been well over three and a half hours. I was nervous to say the least.

Then all of the sudden I see Parker's Neurosurgeon walking to our room. Why didn't he call the nurse? I hate when he pulls fast ones on me! Like taking days off.

Next thing I know he comes in and sits down on our recliner. Oh hey, have a seat? Do you want something to drink? Wait ... I don't live here. I mean I live here, but don't LIVE here. I do know where the free drinks are, though.

He says, "Well, the surgery was difficult. Parker's head was so flat from laying on it for a couple weeks the shunt wasn't very easy to place."

Blank stare. Tears fill eyes.

"Oh don't worry though, he's perfectly fine. I got it in."

.....................................................................................

Thanks for clearing that up, doc. Prrrrobably should have started the conversation by stating that!

At the end of the day, Parker does have  one heck of a flat head. Picture a cliff. Now picture the side of a cliff. That's Parker's head. His surgeon doesn't want to go the helmet route because it will rub his shunt. So, we are basically not allowed to lay him on his back unless it's at night and he's sleeping. We will have therapy at home. More on that later.

He goes on to tell us that everything was good after that point and he was already down in recovery wiggling around. There would also be another couple days of intense antibiotic treatments. Then he says that we should be able to see him soon.

Thank. The. Lord.

When they brought Parker in he looked completely pale. Almost gray. Instantly I knew that we were in for a long night. I went over to him and was talking to him. He was of course crying. Then the vomiting started.

Parker proceeded to vomit and dry heave for over six hours. Have you ever seen an infant dry heave? I hope not. Not sure what happened, but for some reason he had a horrible reaction to the anesthesia and was a sick little guy all night. He literally vomited everywhere we went. Elevator? Vomit. MRI? Vomit. X-Ray? Vomit. Room? Vomit. Parker has been put under anesthesia two other times and never had this sort of reaction.

I was worried sick. My family reassured me that this was completely normal. I was so hysterical that the doctor came in to check him out and she, too, said it was normal. In fact, he could have been sick like that through the next morning. I was convinced his Neurosurgeon nicked something in his stomach when he was putting the tubing in. Of course that's what happened! Duh.

Luckily for us, he got over this sickness in the middle of the night. Turns out, the brain surgeon knows what he's doing.

The next morning they decided to transfer Parker to the regular Pediatric Inpatient Unit. Finally we were on the right path.

UMMM NOT SO MUCH.

Stay tuned. It's a "cue verbal diarrhea" all over the place.

S-Day

I sit here writing this entry looking at my sweet angel baby sleeping in his over-sized hospital crib. I sit here knowing that tomorrow my angel is going to be taken in for his 3rd brain surgery in just a little over a month's time. Words cannot express my level of anxiety, fear and somehow hope all whirled into one.

It's not like I didn't know this day was coming. I knew it was coming over two weeks ago. The thought that he will be taken away from me, yet again, and put under for brain surgery never gets easier. Yesterday we learned that Friday would in fact more than likely be S-Day. Shunt Day. I slept less than 5 hours last night. I know putting the shunt back in is a step in the right direction. I know that this has to happen in order for Parker to go home. Surgery is scary. Brain surgery is SUPER scary.

We were juuust about ready to head out for a MRI when a flash of purple entered our room. Did I mention that Neurosurgeons wear purple here? I know. I know. Purple does not match the camo scrub hat. They are brain surgeons, not stylists.

The Resident Neurosurgeons (or Neurosurgeons in training) are always on the run, literally. I think this particular surgeon has gone through about six pairs of purple crocs (or so we've heard). He runs the rubber thin from all the running he does apparantely. This is also the same surgeon I scolded just a couple days ago for leaving a ventric cap on Parker's crib.

"Did you forget something" I asked holding up the orange ventric cap.

He replied, "The nurses usually get those."

Cue verbal diarhhea...

"Usually is not good enough. Do you see this monster baby with sticky fingers? If he chokes on this with all of his other issues I will not be happy" I replied with a death glare.

Can you imagine if Parker choked on a cap while here? He had to have CPR or something else because of a cap, not because of his situation. Unbelievable!

I took the cap and handed it to him and said, "Throw it away."

GAHHHH!  He did throw it away. I think I scared him. I haven't found an orange cap since. Coincidence, I think not! Nurses are incredibly busy for crying out loud. You removed the cap, throw it away! Drives me crazy. How the heck would she know it's there anyway?  Durp.

He came in and I knew we were about to hear something. The doctor informed us that we would be heading in for surgery either Friday or Monday. It's not considered emergency this time because Parker is stable and has his ventric is taking care of business for his brain. Next thing I know he's fetching the ever so famous release form. The same release form we've signed giving them the right to operate on our son and giving up our right to get ticked if something bad happens. It's always a little nerve wracking, especially given our current situation.

Casey is much braver than me in most situations and he signs his life away. Parker was set for surgery. They officially had our consent.

I of course ask if he will be involved in the surgery and he says that he or another resident would be present. Please remember to pick up all caps and debris from Parker's brain after you are done. Oye.

That was it, Parker was set for surgery. Wrong. It seems that no one, not even the Neurosurgeons, know what time Parker's surgery is going to be. How do you not know? I understand that they are busy people and emergencies definitely happen. However, this child thinks he is dying when he doesn't get to eat every two hours. Literally, every two hours. Yes I am exhausted.

So let's take all of his food away at midnight to only have surgery at 1PM on Friday. That sounds like a brilliant idea! NOT! The nurses who have Parker tonight and tomorrow already deserve a medal of honor. Parker is more traumatized by the fact that he's not eating more than the fact that he just had brain surgery. I know this because we've been through it, twice.

I've noticed an awful lot of coincidences this time around. I can't help but hope that our bad luck is about to end. Remember how I am an ultimate believer in signs? Well, I can't ignore the signs that have been thrown at me. I can only hope that collectively they mean something (knock on wood).

We've literally come full circle with everyone who has treated Parker since his NICU days. Literally. NICU staff doctor - passed him in the hall. NICU nurse-same situation. Parker's doctors and nurses have all been accounted for. It seems so strange that we've run into everyone when we aren't even on the same floor. It gets even stranger. Parker's nurse for his first shunt surgery has been M.I.A. We get here this morning and wouldn't you know...she is his nurse! We even ran into Doogie Howser, our favorite Pediatric Resident Doctor. I don't know, but I feel like it means something. We have run the course. We have persevered. We have come full circle.

On top of that...every penny I've found has been heads up! You better believe I grab those pennies and put them in my pocket. Every time I pull them out, heads up! When we leave here, better than when we came, I am going to place those pennies heads up for the next family. I hope they too have the same blessings we have had.

At this point I am more than likely reading into signs, but that's okay. What-ever gets us through at this point makes it all worth while. I've sat here day in and day out not knowing what each day will bring. Kids have come in and come out, while my sweet angel remains. It's safe to say it's Parker's turn.

Today/Tonight will be horrible for me. The day before and day of surgery is always the worst. Parker has no clue what's going on, thank goodness, but I do. Surgery is terrifying and all of those fears of waiting in the ICU surgery waiting room became reality. The silent prayers, sobs and crying children are in my near future. A piece of my heart is about to be on that operating table once again. My heart will not beat fully until I know he is okay. I swear I can feel it skipping beats as I wipe the tears away and struggle to breath.

Us mothers will give each other the same sympathetic look, tears stinging our eyes. This time we are a little more comfortable around each other having passed one another in the hallways for the past couple weeks. Each one of our stories different, but uniquely the same in that we have to watch our children continue to suffer. We will silently greet the new mothers who's hearts are the operating table for the first time.

Please remember Parker in your prayers this evening and tomorrow. Pray that he continues to show strength. A prayer for the doctors would be helpful as well. Pray that they take care of sweet Parker and that they remove all orange caps from his brain while sparing yet another pair of purple crocs.