Hydro Journey Round #3 - Ding Ding!

Our last experience in the ER in Iowa City was definitely brief and oddly enough pleasing. We were there for maybe two hours before we knew what was wrong with our sweet baby and what they were going to do about it. I could only wish that was the case this time.

We were in the ER for a while. Because Parker is technically a Neuro Surgeon baby. There is a level of complication when it comes to care. Casey called a Neuro Surgeon resident before our pediatric appointment. He told us not to come in. He was "fine." Umm...try again fella. Bringing him anyway. I swear to God we should get a discount for doing diagnostics before they do. It just goes to show that no matter how much they may know, you are always going to know your child better.

Upon arrival the ER doctor was very thorough. He was no stranger to the shunt scene and I could see in his face that he too believed it was a shunt infection. This was definitely not his first rodeo and he immediatley consulted neuro surgery to do a shunt tap.

Ahh a shunt tap. Ever heard of a spinal tap? Well, lucky for us a shunt gets the same fluid a spinal tap does with way less pain. However, if you put a needle in it you are taking a risk of contamination and malfunction when there may be absolutely nothing wrong with it. The ER doctor was willing to take that risk and the Neuro Surgeon was not quite there yet.

So we repeated a lot of the tests we did the prior day to only learn those too were normal. Naturally, the shunt was working. Casey and I always thought if something were to go wrong, it would be that darn shunt malfunction and that was the worst thing that could happen. I do recall our surgeon telling us immediately after surgery that the risk of a shunt infection is extremely rare, but shunt malfunction is higher. So with our odds we will be here in a month with that issue.

I do not know what it is, but for some reason Parker cannot catch a break in any way, shape or form. Whenever someone tries to give him an IV it turns into the worst experience they've ever had. He is so chubby that they can never find a vein. This time, he was chubby and dehydrated so locating a vein was nearly impossible. It's so painful to watch that we had to sit in a lounge for three 45 minute IV insertion attempts. I could still hear my angel screaming and of course that is horrible.

Once again, I know my child and I told the nurse during her first failed attempt that they always find a vein in his left foot. Every. Single. Time. I also told her to call the flight NICU RN. She is one of the best nurses I have ever met in my entire life. This lady puts IVs in the tiniest of babies IN THE AIR. Love the crap out of her and her ability to not torture my child when he needs an IV. I didn't know if she was on call, but if she was, get her down here and she'll get to business.

Three attemps later they called her. She remembered us and immediately took sympathy in our situation. She has also come by and visited us. Like I said, love her to death.

After we basically exhausted all tests the Neurosurgeon decided he was ready to tap the shunt. The fluid came out clear, which was good. He came back about 30 minutes later and told us that the fluid contained bacteria and they were prepping an operating room to remove the shunt and insert an external catheder, immediately.

All in the same moment the  ER doctor and the Neurosurgeon started arguing because Parker had been given an extremely low dose of morphine. The ER doctor was just trying to be compassionate and give that sweet baby a break from his pain, seeing how he had been in it for over a day. The Neurosurgeon wanted him to be fully alert to assess him  before surgery. At the end of the day the Neurosurgeon asked him to step outside and the ER doctor quickly obliged. Did I mention the ER doctor was about double the size of the Neurosurgeon? Place your bets! Though the Neurosurgeon ultimately won the Battle of Morphine 2014 he did not have the guts to chat with the ER doctor we later learned. He was a no show. I have to giggle because he knew he was smaller and didn't have a chance!

I was sobbing because it was all just too much. My poor baby is suffering. Why does he have to continue to suffer? Why are these doctors arguing and gosh darn it why can't we just catch a break already! I was so worked up I do not even remember much after I knew he was going to be taken away from my arms, yet again, for brain surgery.

They reversed the effects of the morphine, somehow, and both doctors pled their cases to Casey and I. At the end of the day, though some might argue it was inappropriate to argue like that in front of us, I am happy they did. I am so happy that the doctors here feel passionate enough to do that. They care about my son so much and only want what's best. I am grateful for the hands and knowledge of these doctors that treat my sweet angel. Some are more compassionate than others, but at the end of the day, they all work their butts off to make him better.

When social workers are called you know it's getting serious. The social worker that accompanied us during our Hydro diagnosis came into the room again looking gloom. She told us that we would walk Parker to the operating room and she would take us to the intensive care waiting room while the operation was underway. As you may remember my husband walked Parker to the operating room the first time because I am a big ole wiener. This time it happeneed so fast I didn't have a chance to think it over.

Next thing I know they are pushing my sweet baby in that big ole bed to the operating room and we are following quickly. Neuro Surgeons are extremely serious people and thank goodness they are! We've had several doctors tell us that something happens to Neuro Surgeons in med school. They kind of lose all personality and are very serious beings.

As we are sitting in the elevator, and I am sobbing, the Neuro Surgeon looks over at me and says, "Well, I told the ICU they will know who Parker is."

I looked at him puzzled.

He then says, "I told them he is the cutest little baby with beautiful blue eyes."

Of course I started sobbing again and tears are forming as I recall the conversation. This doctor was getting soft to us, after all, we were an anomoly. Honestly, I didn't know he had it in him, but for Parker, I am so glad he was soft. You know you are a rare case when every doctor you meet says, "Sorry it's just bad luck." I have been told that  since I had him. SICK OF the bad luck already.

Parker went into surgery at 11PM. The hospital was literally a ghost town, which was good since I was a hot mess. Snot was running down my face and I was gasping-borderline hyperventilating. Yep, I was that mom. We walked him into the actual hallway of the operating room. Serious business those hallways. Doctors were scrubbed up and two of them approached Casey and I. The anesthesiologists. They asked us several questions about our history of being put under and Parker's since this wasn't his first time. They told me he would be taken care of and the social worker ushered us.

At this point my world was spinning. I could see the operating rooms - not too far away. I wanted to pick up my sweet angel one last time before they took him but I couldn't move.

I do not know why, but I am always slightly offended when someone who does not even know my son, tells me they will take good care of him. First of all, this is not helping and second of all, I do not believe you. Umm...last time I checked I was told he would be just fine and here we are 3 WEEKS LATER! I am terrified! He is going to wake up and not know where the heck he is and who you are and I cannot be there. I am leaving him to be terrified and I feel like a horrible mother. I feel helpless and have lost any little bit of control I had.

Words cannot express how I felt at that moment. It never gets easier. When Parker is 37 it will not be any easier. As I walked away from my son I knew there was a possibility I would never see him again. I suddenly thought of his smile and recent spouts of giggles. Suddenly I could smell him as if I was holding him in my arms. I realized that this little man had my entire heart and I would give anything and I mean anything to take all of his pain away. He is a part of me and I have always felt this deep connection to him. When he goes into surgery I literally feel like a piece of me is dying. It's suddenly hard to breath. Tears are streaming down my cheeks so fast that I cannot see.

Casey takes my hand and we leave our sweet angel with the doctors.

The social worker leads us to our waiting room and we sit.

She asks, "Do you need anything else?"

Immediately the smart mouth in me thinks, "Umm...yeah. If you would happen to have a Xanax and a Martini that would be great. Oh yeah, and a miracle too. That would be helpful".

I really have to watch myself here. Normally I am pretty self-contained, unless I am comfortable around you. Then I would say I am pretty sassy. Whenever I am at this hospital with Parker whatever smart mouth thing I'm thinking quickly becomes verbal diarrhea. I have IBS of the mouth and just like the butt IBS it's not pretty and super unexpected. Find your nearest bathroom!! I will make no apologies for my verbal diarrhea. It's something Casey and I can chat about later when we need a good laugh and are delirious from lack of sleep. I love when Casey and I can laugh so hard about the dumbest things I say or do when we are in complete delirian. Absolutely love it!

We are accompanied by other praying families. Praying for their children who are having surgeries or are in comas. Pediatric Intensive Care waiting rooms are a very gloom and doom place to be. There are no smiles or laughs. Just solemn conversation. I was accompanied by other mothers. They too had a piece of their heart on an operating room table. Their fears were my fears and we all gave each other the same sympathetic look. You can't be with your babies at all times and sometimes you have to trust that they will be okay, but sometimes, that just isn't the case and as a mother in an ICU waiting room you know that. It's scary as hell frankly.

Casey and I sat and waited for what seemed like hours. They told us he would be done in three hours. One hour later a surgeon, who we have never seen before, comes to brief us. It's like this happens in slow motion. The surgeon approaches us and I am like, it's been an hour. Oh my god he didn't make it. It's only been an hour. Turns out everything went wonderfully and Parker was already in recovery. They took out the infected shunt. A couple moments later a nurse came by to take us to his room.

This was a scene that unfortunately was not new to us. There was our sweet angel sleeping in an oversized crib. For those of you who know me personally you aren't going to be surprised by this next comment. I have often pondered several ways to get into that crib with him. I just want to lay in there and snuggle with my baby. Nothing weird about that right? I'm not looking to wear footie pajamas or anything. This is NOT the next TLC special or strange addiction. Seriously though, I am getting closer to figuring it out...for right now my back will burn every night when I leave his side because I am halfway in and halfway out. I need to feel him and I need him to see that I am there, always.

Parker rested comfortably in his crib so Casey and I decided to go and get our bags from the car. We were silent, mostly, on our walk to the car. I often wonder what was going through his mind. Knowing my husband I could see the pain and anguish in his face. He too hurt just like I did, he's just stronger and he was holding it together for me. The walk from PICU to the ER to get our car is VERY long. Then when the ER admins realized we were admitted they give you that all too familiar sympathetic look. We got back to Parker's room and decided to try and get some sleep.

It was about 3AM when I decided I could no longer sleep in Parker's room. It's super loud in ICU rooms. Beeps and beeps and more beeps! I grabbed my pillow and headed for the family lounge. I remember the ICU was a complete ghost town. Usually nurses are at their stations monitoring from their computers nearby. Then all of the sudden I look to my left and I see a group of doctors and nurses giving a little girl CPR. A nurse was literally on her bed pumping with all her might.

It was like a train wreck and I couldn't help but look. When I was finally able to peel my eyes away I walked to the family lounge shocked by what I just witnessed. I sat still on a couch in a cold lounge with strangers. It was 3AM and I could hear crying, praying and snoring. Tears were streaming down my face praying to God once again to grace my sweet family with his love, strength and courage. For the first time I also prayed that he would give us a break. I have never prayed that before, but this time, all I could do was imagine Parker on that bed getting CPR. I also prayed that if God for one second thought he needed my sweet angel he would spare him and take me instead.

God answered my prayer for strength because he sent my husband, the strongest person I know (besides Parker of course). There wasn't anywhere for him to sleep so he slept right by me on the floor. It's hard to remember and have faith in times like this, but God answers prayers every day. They may not be the answers you thought you would get, but he is there. I keep telling myself that every time I hear my angel in pain crying. We are still trying to understand why our family, why our Parker.

For now we are going to put away the "why's" as hard as that is. My dad always offers great advice in my times of emotional distress. I know it pains him to see his daughter go through this. Our parents had "normal" babies and were blessed with health and good memories. I think Casey had his tonsils out? Big whoop!  My dad reminds me to look around. It could ALWAYS be worse. Be grateful that he is a strong baby, breathing on his own, eating on his own, and has such a loving and supportive family behind him. It's hard to see when you are knee deep in anger and self-pity. Sometimes that reminder is just what I need to snap myself out of it. I like the dose of reality my dad gives me. He knows just when I need the reminder, too. Plus he doesn't lie. So, I know he wouldn't say it or give me false hope if he really didn't believe it.

The next morning was awfully grim. Depressed, we went into our sweet angel baby's room praying that he had a decentish night. From this point on everything we learned was a shock and not at all what we expected.   

Hydro Journey Round #3 - Ding Ding!