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.
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.
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