ShuntNado

"Excuse me I have to tell you something. I do not want you to panic."

My child is in the ICU. Anything you tell me at this point-I'm probably going to panic. I immediately assume she has the results of some horrible test result that we haven't heard of yet.

So I say, "What's going on?"

"Umm...we were just issued a tornado warning and we have to close all the blinds on the windows. Don't worry though. Parker is mobile. We will just grab him and run for the stairs."

Are. You. Kidding. Me. At this point I am fairly certain a tornado is going to crash through our room. Gosh darn it. Immediatlely I start thinking of our exit strategy. I will grab the brain fluid bag because I am pretty sure that's important...the IVs can wait. I know how to unhook those. I will grab bottles, too. He cannot wait for food if we are trapped in a stairwell. Diapers might be a good idea for everyone involved...

When it rains it pours, literally. Good news, the tornado did not land near the hospital. Mother Nature is clearly on crack because the next day after the tornado warning, it snowed. Pull it together Mother Nature. We do not have time for this crap.

The day after Parker was admitted into the hospital and had his shunt removed he was in an intense amount of pain. It was absolutely horrible to witness. He would cry nonstop and we had to unfortunately give him morphine, which consequently, gave him red blotches all over his chest and belly. The morphine didn't even really do the trick. The blood cultures from our first trip to the ER in Clinton showed that he did have bacteria in his blood. Cultures from Iowa City showed no bacteria. After they realized his blood was good to go it was safe to put in a PICC line so he could be "poke free" mostly.

I bawled my eyes out when the Nurse Practicioner came to put the PICC in. I do not disagree that she is super talented and can do this with her eyes closed. When I started crying I think I slightly offended her. Her ability was never in question. It was the fact that my sweet angel was about to be poked and in pain, yet again. I would have to sit there and let this pain continue for him when he was feeling so sick. They sedated him a bit (thank goodness) and for the next hour they worked on getting the line in. It was successful and will make the administration of his antibiotic doses a lot easier. IVs in babies only last a couple of days. Now we won't have to worry about that.

That baby was spiking fevers close to 103. We would put cool cloths on his forehead. When they were pulled off the cloth would literally be hot. It was absolutely awful. Mommy is supposed to take the pain away with a simple kiss of his "owwee". This Mommy could do nothing to make the pain go away and it is quite possibly one of the worst feelings in the world. That was one of the reasons I cried when the NP came to put in the PICC line. It's just this feeling of helplessness. Really quite overwhelming.

This particular Hydro Journey has been, without a doubt, one of the most trying times in my entire life. Just when things start to look up, we get slammed back down again. At this point Casey and I celebrate little victories. For instance, a parking spot close to the walkway. That right there is a guaranteed high-five! We also celebrate knowing that our sweet angel's bacteria is the "non-resistent" kind. The doctor looks at us and says, "Umm, hello your child is still in the PICU and still has a life threatening bacteria."

Cue Verbal Diarrhea..."Listen here buddy. You just told us he has the better of the two. That may not mean a lot to you because obviously you've never been in our situation. It means a lot to us. We take what we can get. Believe me no one knows better than we do where he is at. We get it. We live this nightmare over and over again every single day."

Get out of here unless you plan on changing his dirty diaper.

You better believe we high five over pees, poops and no vomiting. We celebrate giggles, laughs, and kicks! Front row parking spot? Quick line at the coffee cart? No Fever? Buffalo Chicken Bites in the caf? All high fives in our book! Do not rain on our parade. Since Mother Nature is clearly still on crack she has that covered.

After several days on the antibiotic Parker was finally starting to feel better. He started eating little amounts on the hour and next thing we knew he was demanding his full feeding schedule. That was all great news. His blood was clear of bacteria, but his Cerebral Spinal Fluid or CSF was still showing bacteria. Just when we thought we were going to get a surgery date we were told that after several days of negative cultures of his CSF they found bacteria.

Seriously.

It's terrifying! Are the antibiotics not working? He doesn't seem sick... Of course he didn't seem sick to us before until he started throwing up everywhere. Clinically we are being told he's great. It's just that brain of his that is causing so much trouble. Casey and I do not want to rush his treatment. I will stay here for three months if it meant he wouldn't be in this situation again. Our biggest fear is that they rush the treatment, operate, and bacteria show up.

We had a nice chat with his doctor. She knows my intense level of anxiety for "All Things Parker." I love this little boy to pieces and she knows that because she sees me in here day in and day out. She sees my attempts at snuggling with him when I can't easily pick him up. She is the doctor that encourages Parker & Mommy snuggle time every day. The fact that Parker has both of his parents here a majority of the time does not go unnoticed. We are involved as much as possible when it comes to his daily cares: bath, feeding, diaper, play, napping, etc.You never know when those little things in life can get taken away from you. Cherish every single moment, even the poops. :-)

Casey is trying to go back and forth from work to the hospital as much as he can. It's absolutley exhausting for him no doubt. However, we are not naive enough to believe this won't or can't happen again. There is always a possibility that we can end up in this room again in just a couple of weeks. No one has control over this situation and it's best to save time and not waste it in one incident.

Parker demands a little more care than the average baby. A lot of people aren't sure what to look for exactly when he has "flare ups". Could this vomit be hydro related? Is he crabbier than usual? Really, it's hard to say. When this happened...again...Casey and I decided it would be best that I stay home with him. The poor baby cannot get ahead because for the past two months he's been forced to lay on his back. His little head is so big and we can't get his neck strength up. He is definitely going to need some TLC after this ordeal. I think I'm pretty keen on what he needs and when he's sick, or just acting "funny". We were very fortunate that our mom's offered to stay with him when I went back to work.  There isn't anything better than a Grandma's love. Maybe someday he will get to spend some time with his Grandma's again, but for now, he is going to stay home with Mommy.

The Mommy guilt that I often felt going back to work was full force when he got the infection. Every moment with him is so precious. Nothing else really seems to matter, especially when he requires so much attention and care. I think he will be happy to at least spend a while with Mommy.

My husand and I have finally come at peace with the situation. We have essentially stopped and we are smelling the roses. Our life is now running what seems to be in slow motion. There isn't a worry about next week or next year. Everything we do is for our son. We are his biggest advocates, his voice. It's hard to stop worrying and let God execute his plan for you and your children. We've somehow managed to do it and wouldn't you know, our life is a little easier to deal with. Looking back at our misfortunes we realize how many blessings have truly come out of them. Life is precious and the moments we have with Parker are what make us get up every morning and relive this nightmare over and over again.

Somewhere along this journey I lost my faith. I mean, lost it. When Casey would ask us to pray I wouldn't pray. I wouldn't even close my eyes. I. Was. Mad. What kind of God makes children sick? I have never been angrier at God than I was when Parker got sick. My son was diagnosed with in incurable brain disease. There is NO cure. But you know what...God gave me an amazing little boy who blesses everyone he meets. He is a walking miracle. He is my miracle. My angel baby, sent from God. He saved me just as much as I saved him. He helped renew my faith.

I had my blinders on for a while, but they are off. God and I - we're good.