ER

I'm pretty sure this is our 6th visit to the ER since Christmas, but who's counting? We discovered this morning that her bag of TPN was leaking. Somehow it was cut---though I cant for the life of me figure out how(it was inside her backpack) So I paged the nurse and she paged the Dr who said in come in for a blood culture and some prophylactic antibiotics. Hours in a germy ER. Now imagine how UN FUN that might be, then double it. That's about how fun it was. I am so tired I cant function. Im stressed and tired. I decided not to drive the hour to our children's hospital but to go to the ER near me. What a huge mistake. I'm warning you that what you are about to read is shocking, I can imagine that it would be shocking to most lay persons who have no medical experience whats-so-ever and even more shocking to those who do.

Upon arrival our RN came in to do an assessment. She asked me what had happen. I explained that her TPN may have been contaminated. As we talk I am changing Marissa's diaper and nurse notices her g-tube. She then asks me...wait...are you ready for it? she asked me if I gave Marissa her TPN via her G-TUBE. I'm kidding right? I mean really a REGISTERED nurse would SURELY know the difference between ENTERNAL and PARENTERAL nutrition right?? Nope.

Next comes Dr and I ask him to do blood cultures and for some antibiotics. He starts to write a script. I mean surely this DOCTOR read the chart and her medical history right? How does some liquid bubble gum flavored stuff sound to you? I mean she doesn't swallow or take anything by mouth, and she doesn't ABSORB in the 2cm of small intestine and no colon she has(doesn't have)...No Mr smarty pants Dr we would like a shot--thank you very much. Then he asked me which one to give her---hello who's the fucking Dr?

OK moving on.

Blood cultures. In walks the barely 18yr fresh out of mail order trade school to do blood cultures on my daughter---who has a CVL. Me: you cant do that. Her: I assure you ma'am I can its my job and she shows me her badge. Me: yes I'm sure the 6weeks of school you got qualifies you to do this. Sorry girly you'll have to get an RN(OK I didn't really say that, I was nice..turns out she had no intention to do them out of her line she was going to do it via a peripheral vein...um mm yeah.

So in the meantime while we wait for RN to come in. I can hear her talking with the pt in the next bed. He fell on his skate board and broke his wrist--well really they think he may have broken it so they split it and she gives him his discharge orders--and she says...again I am not joking, she says: Make sure you follow up with an orthoDONTIST about this arm...HIS ARM. an orthodontist. I was dying.

Then she comes into our room and proceeds to do the blood culture---no gloves didn't even see her wash her hands. I stopped her right there and said oh no. For one you didn't wash your hands, for two you aren't wearing gloves(and they need to be sterile) and you don't have all of your supplies. She looked at me like: are you kidding? I wasn't. I then told her I didn't have an extra clave with me and Id need for her to get one. She didn't know what a clave was...I show her she calls it a cap. fine whatever. So then she comes in with the clave and gloves. Puts the gloves on THEN opens the other supplies and goes right in to do the clave change. I almost screamed at her. First of all if she does the clave change now she will almost certainly contaminate the culture and for two she touched everything, wasn't sterile and needed to start over. She walked out and came back with another nurse. Because you know I'm a crazy mom. Then she did the culture(though I'm not convinced she didn't contaminate it) and went to do the clave/cap change without cleaning it or priming the new clave. I just asked her to walk away and I did it myself.

They were all talking shit about me behind the curtain--saying have you ever called it a clave? what the hell is a clave? and saying: oh your not sterile and then laughing. Whatever whatever whatever. They were all about 22 at the most and its anyones guess how that nurse passed her state boards. I do remember in school our teachers saying there are great nurses and there are awful nurses. Today I met an awful nurse. Even the Dr was clueless. I wont ever again try and take the easy way out with my daughter again by going to a local er. I learned my lesson.
Does this post show how truly tired I am?

Where do I even start?

I'm tired so I'm not sure this is the best time for a blog post but I'm afraid if I don't get this stuff down it might just as well be gone for good. It seems I do have some resilience after all, in the case of me in comes in the form of selective memory. One of the past three days--why yes you see the selective memory is already kicking in!!....I went to change Mari and noticed her shirt was wet. I looked down and what do you know? She had no g-tube in place...just a nice fat juicy hole in her abdomen, yeah. Totally traumatic. This all might be old hat to many of the parents who Ive begun to associate with but for me? Not so much. I wasn't sure what to do next. I had after all, no clue how long it had been out. I started to instruct each of my children to hunt for it and soon it was found. Then some common sense popped in and I decided it wouldn't be the best idea to reinsert the same mi-c key so I began to search for the extra I had on hand. It was quite literally 10inches away from my face yet it took me about 10minutes to find it. Once I did I lubed it up(with water, because its all I had) and popped it right in without incident. It was amazingly simple and drama free, who knew? This morning I went in to wake her and the back of her shirt was soaked. I tape her CVL over her shoulder to keep her curious fingers off the connecting parts. Sure enough her line was broken, damnit. So I called the tpn nurse and she had another tpn nurse meet me at the hospital(an hour away) to repair it. I wasn't home until 5pm so it took all day and she got two shots of antibiotics. She vomited on the drive home and then again before bed. I only had to do one dressing change thankfully. This brings me to a conversation I had with her specialty team today(over the phone mind you as I couldn't attend clinic because we were repairing her line) Ive been confused as hell. I'm keeping a journal of everything that goes in and out. I couldn't for the LIFE of me figure out why we can go a week without any vomiting or diarrhea and then out of the blue(when nothing has changed) she will suddenly vomit etc. Well one member of the team asked me if I noticed a correlation with the flagyl. Sure enough she didn't vomit at all last week when she was on it and has had several bouts with vomiting this week(her week off) SO we are going to try out constant tx and see what happens. I hope this is it. Though I am sure it will only be one in a long line of "its" over this child's lifetime. I found out today that this is the longest Marissa has ever gone without a line infection. Today is my 120th day as her mom. Seems like YEARS. We've had 6trips to the hospital in those 120days with 3hospitalizations, thankfully none of them due to a line infection. That's it I'm so tired I cant see anymore.