Beauty is in Getting the I.V. on the First Stick

Here we are again... Back in the hospital. Pulmonary Function Tests revealed results at 39% for large airway function for Dan. So, Dr. Sindel wrote the orders, and we skipped merrily over to USA Women and Children's.

Now, a couple of interesting things happened upon our arrival... First, as we were checking in at admitting, Sarah began having a serious coughing attack. This was precisely the type of curl your toes coughing fit Sarah calls an "allergy attack". She had only a few short minutes before been trying to describe the attack to Dr. Sindel. The admitting clerk waved Sarah over to get her hospital bracelet on, and I had to explain that Danielle was the one being admitted. The poor clerk looked at me like I was obviously on some type of hallucinogen, but put the hospital bracelet on Dan's arm, against her better judgement.

The next interesting thing that occurred was that we checked in at 5:30, and no nurse came to see us until 7:30. Well, this was fairly predictable. You see... Shift change is at 7:00, and I'm sure the day shift nurse, (who we never even laid eyes upon), said to herself, "I'm not doing an intake... Leave that for the night nurse."

When the night nurse wandered in, I almost laughed. The last time Dan was in the hospital, I couldn't stay. Grammy and Mimi took turns staying, along with her Dad and Dave. Well, Dan didn't fair so well. She ended up getting stuck a lot, and nurses were unable to find the vein or prevent it from blowing. It is a fairly traumatic process. But, this particular night nurse is one that is infamous in our house. Both Dan and Sarah despise her. We have much history with this particular nurse. She is older, and sports a very large mole directly on the tip of her nose. Although, it really isn't just the mole that creeps the girls out... She comes in the middle of the night, flips on the light and talks loudly. She doesn't make an effort to catch the I.V. before it beeps, and things generally don't get done in a timely manner. Usually care from this nurse means less rest and more disturbance and upset. Sometimes I have been tempted to say, "Take some time off... I'll take this shift for you. Just bring the drugs."

The funny thing is that we always get this nurse, which leads me to believe that she probably sees the girls names on the board and asks for them. And, I wonder... Does she like them? Doesn't she feel the disdain in the room? Does she mistake the curt answers and uncomfortable grinning for genuine affection?

But, tonight when she walked in, I just told Dan to trust the process... And, this loud, annoying, disruptive, mole-on-the-tip-of-the-nose nurse was able to get the I.V. on the first stick. Suddenly, none of the annoying past experiences mattered. All that mattered was that she got the I.V. and saved my kid a little bit of pain. And, she saved me a little bit of feeling that horrible hopelessness that plagues me each and every time one of my beautiful girls has to get stuck. And, I told her, "Thank you so much..."

Now, as I type this, it is 11:30 p.m. No I.V. meds have been hung. No one has even offered us a cup of ice... But, I know that all is well. And, I am so grateful that she was able to do exactly what we needed her to do. Get the vein on the first stick without blowing it... And, because of that, she looks like Miss America to me.

The Roll Lady

I entered the cafeteria at Women and Children's Hospital in Mobile just hoping to grab a quick lunch to take back upstairs so that Sarah and I could eat together. When one of the girls is hospitalized I sometimes takes on a floaty, surreal kind of feeling. This was probably my state of mind when I entered the cafeteria... Just kind of on auto-pilot looking to do the next apparent thing, (like eat lunch), and return quickly.

Sarah was hospitalized on Monday. Her pulmonary functions had fallen and she was running a fever. This is the 3rd course of I.V. medications she has had in the last four months. Further, Dr. Sindel has been seriously concerned about her weight and nutrition levels. He is convinced that her lack of weight gain and current low nutritional levels are contributing to her roller coaster of illness of late.

I have struggled with an overwhelming feeling of powerlessness, given I have absolutely no control over what another person injests into her body. Coaxing and cajoling usually only does one of two things: creates a power struggle between Sarah and I, or leaves us both feeling frustrated and angry. Still, I have this tape in my head that plays and says, "You are Christy: CF-Mom Extraordinairre. You should be able to fix this."

So, entering the cafeteria that day, my emotional, mental and spiritual state was probably not what it usually is. That is precisely when I encountered the woman hereafter referred to as "The Roll Lady". She was wearing a lab coat and a badge indicating she was an associate professor for USA. I noted that she was probably some type of doctor. We waddled through the line side by side getting our food. I ordered chicken parmesan and turnip greens. She ordered the vegetable plate, which is advertised to be three vegetables and a roll. We were shuffling through without incident until she reached the roll display. The only bread available was corn bread. She asked the gentleman at the roll station if they had any more rolls. He indicated that they did not. In the mean while, I moved over to get my unsweet tea, while The Roll Lady began impuning the gentleman's family heritage because there were no longer any rolls available. Somehow, she made it to the check-out line right before me, so I was again stuck.
I'm not sure why people look at me and think, "I need to talk to this person," but she seemed to assume that I would be a sympathetic ear to her cause.

"Can you believe they don't have any rolls? They aren't even that good. All they have is cornbread. It is a mix and they add sugar. I'm not eating that."

I gripped my styrofoam tray and gave a non-committed type of "Humph".

"I mean, if they are going to advertise a vegetable tray with a bread they should have a roll. There isn't even one DAMN roll to be had!"

This is probably the point that I looked at her badge and noted her associate professor status. I remained silent this time and shifted my eyes awkwardly around hoping she would be quiet given my lack of response to her delimma.

Instead, she turned to the gentleman in front of her, "I'll bet I have to pay the same price even though I don't get a roll."

The gentleman paid for his lunch, tucked his head down, and scurried away from The Roll Lady. Unfortunately, now there was no one between her and the cashier so she really let loose. She opened her styrofoam container to show the cashier what she had gotten. The cashier said,

"One vegetable plate."

The Roll Lady boomed, "Why should I have to pay the entire cost of a vegetable plate when there aren't any DAMN rolls?"

The nervous little cashier lady called to a passing cafeteria helper, "Do we have anymore rolls? Can we get this lady a roll?" The boy rushed away without answering, just shaking his head.

The Roll Lady returned her gaze to me and said loudly, "I mean, if they are going to offer a service, they ought to be able to provide it! All I want is a DAMN roll! That isn't too much to ask."

The cafeteria was jammed with people and every eye was staring at The Roll Lady. She paid $2.06 for her meal, (Yes, a whopping $2.06- That's correct.) and stepped to the other side of the line to continue ranting while I paid. I watched as the little cashier pleaded for someone to get the crazy Roll Lady a roll. And, briefly, I thought about putting her in her place.

"Listen here, Roll Lady!" (I had already named her that in my head.) "It is certainly not anyone's fault that they ran out of rolls. The cashier has nothing to do with the preparing of the food, so cursing at her isn't going to help one iota. Further, your badge says, 'Associate Professor'. Are you meaning to tell me that you have a Doctorate Degree and you are acting like this in public? Not only public, but in a hospital where there are sick children? Right now, I am here with my daughter, who is receiving I.V. antibiotics for the 3rd time in four months, and I don't intend to listen to your crazy, abusive self ranting about a lack of rolls. Shame on you! Apologize to everyone in this cafeteria and be gone!"

SIGH. I thought about saying it. I kind of wish I had said it. But, I didn't. I stood there quietly and scurried quickly away from the crazy, ranting Roll Lady and the whole scene.

When I returned to the room, I relayed the Roll Lady story to Sarah. I also looked on USA's website to see if there was a picture of her somewhere. I fully intended to out her on my blog. Alas, her picture was nowhere to be found, and I didn't note the name on her tag. Thus, The Roll Lady shall remain anonymous. But, maybe, just maybe this little blog will make someone think long and hard before becoming a Roll Lady themselves.

Namaste'.

Child Life Specialist

Anna Cat
Amy Brown is her Child Life Specialist.

Sarah started running a fever on Wednesday. I took her to Dr. Sindel, she was hospitalized on Thursday overnight, and discharged on Friday. Currently, we are doing I.V. at home... Fortaz and Azactam for those who are interested in that kind of thing. She is still running a fever off and on, so we are playing it by ear with regard to when she will return to school.

That's right! School started back this past Monday. It has been really hairy-carey trying to do everything necessary to get the school year started off on the right foot, and then having to regroup with Sar. I know for sure, though, that there is never a good time. I have not once, in the fifteen years I have been dealing with cystic fibrosis clapped my hands together and jumped up and down exclaiming, "Oh goody! Let's get going to the hospital!"

Still, focusing on being grateful that medications are available to help my kids helps put me in a better frame of mind. Somehow the mind usually wants to look at what's wrong before I am able to shake it and shift the focus to what's right. Whether I like it or not, it is always about my perspective on things. Learning to be grateful in the midst of calamity brings much more peace of mind than becoming mired in the turmoil of all the challenges CF brings.

Sarah isn't feeling her best right now, which makes her a WEE BIT CRANKY. This makes it more and more difficult for me to maintain my supportive, spiritual, CF-Mom Extraordinairre persona. It's hard to lovingly comfort someone who is snapping your head off every time you ask something. Thus, my primary focus has been not to beat the child with the life threatening illness. So far, we're all hanging in there.

During this last, brief hospital stay, I met a new lady recently hired who introduced herself as a "Child Life Specialist". My ears perked up... "What was that title?" She explained that her job is to assist the children who are hospitalized in whatever way they need assistance. So, if they need extra help with school work, through Class Act (the hospital school), she does that... If the children need comforting during a procedure, she does that... Whatever children need to help improve the quality of their overall life experience in the hospital is what she does. This is what I do at work... Anything to try to improve a child's life experience in school. I love the title. I'm thinking of adopting it for myself.

I give myself new titles all the time.... Mainly because special education is full of acronyms that no one understands anyway. I am the LSC for my school. What's that stand for, you ask? "Local Survey Chairman"... What in the heck is that? Exactly. To parents I say, "I am the special education coordinator for our school." But, to people I work with it means something else entirely... "AAAKKK! I have a form to fill out and I don't have a clue..." Ask Christy. "AAAAKKK!!! This parent is a pain in my elbow. She is threatening to sue us..." Call Christy. "AAAKKK! There is a kid throwing a whopper of a fit in the hallway." Get Christy. (Although, I'm not complaining. I rather like the excitement of conquering those types of challenging situations...) I just don't like the stress of trying to do all of that and teach.

But, I like the idea of "Child Life Specialist"... It is so descriptive, and it works to describe my job at school and my job as CF-Mom Extraordinairre. My job is to do whatever is necessary to improve the quality of life for children... Whether they are my own children or someone else's. One of the ladies on our SpEd team even coined a phrase that people use throughout the building... Occasionally, a child will need an attitude adjustment, and I happily provide that for them. My friend, Debra, when asked what happened to bring about the change says, "Oh, Christy 'Maxwelled' him." I suppose that goes right along with the all-encompassing title of "Child Life Specialist"... As does, doing the laundry, making dinner, running to band parent meetings, praying with my kids, shuttling my child to gymnastics and dance, and reminding Sarah that it is within my very special power to remove every priviledge she ever thought about having if she talks to me in that tone one more time... "Child Life Specialist".