Monday, July 18, 2011

My Fragile Child - Guest post by Christine

Here we go again…

Experiencing yet another night and morning of crying and screaming and thrashing about, I finally decided to take my girl to the ER.  Something was definitely distressing her greatly; nothing was helping: Advil, hydrocodone, diazapam, etc.  I tried everything we had/I could think of to calm her and make her comfortable. 

My less than enthusiastic husband “volunteered” to join me-as usual starting out with the same old same old “every time we plan to go on vacation something happens to her” (we are supposed to be leaving on a family road trip next week) – really dear?  I am stressed enough and do not need you to add to it with your comments.  Please calm down to help us through this chapter of Kaet’s life. 

Pack her backpack, make sure we have the feeding tube extensions (NCH doesn’ t have them- found that out the hard way last trip to the ER), DVD player -an absolute must have, extra clothes, diapers, towels, juice, etc. (all the necessities of leaving the house with our special girl). Change the clothes she is wearing – absolutely soaked with sweat from thrashing about all morning, load the wheelchair in the car, Kaet in her car seat and off we go. 

The ride there was actually uneventful; almost had my doubts that we needed the ER visit, but knew I would regret it if I didn’t make sure she was okay.  We arrived at the ER and thankfully there were only a couple people ahead of us (adults that wouldn’t be going to the peds section) this should be quick, right? Of course not, we waited and Todd wheeled her back and forth through the waiting area while she cried and screamed in her chair. Taking too long he decided to try to carry her around (5ft tall and 80 lbs) until they could get around to her.  I could see his frustrations building. 

Finally, after what seemed like an eternity, we were called upon. 

Staff: “Will she be cooperative for stats?”

 Me: ” No, not really!” 

Staff: “Do you know how much she weighs?” 

Me:  “Approximately 80 pounds.“

Staff: "That won’t work , the Doctor will need an exact weight.  Will she stand for a minute on the scale?"

Me: “No.”

Staff: “Can she sit on the other type of scale?”

Me: “No”

Even so, back to the room to get stats we go – all the while my husband carrying our “little” girl! UGH!

After the adventure of getting her weighed and attempting to get an O2 reading on a screaming child; we finally were taken back to the exam room to see the Doctor, so we thought.  We arranged Kaet on the stretcher as best we could, set up her DVD player and tried to keep her calm.  It was then that I noticed it; what was that strange “ball like” look to her collar bone? – Yep, before the Dr. even walked in, it was obvious, we were dealing with a broken collar bone.
Smiley Face

The Doctor walks in after at least 15 minutes (mind you I said there was no one in Peds at the time). After explaining the events leading to our decision to come to the ER, I pointed out to her what we had seen.  She touched it and said yes, looks like a broken collar bone.  We’ll have to get an x-ray.  By this point Kaet was out of control; I was almost lying on top of her to try to keep her from thrashing about and Todd trying to keep her arm from moving around.  I had to ask the Doctor for something to help relax her; from the options given, my best guess at what would help was Ativan.  Again, we wait as they take their time getting the meds, then wait for it to take effect, NOT!  My girl is a fighter, kept on going screaming, crying and thrashing about.
X-ray came in with a portable machine to make it “easier” – we did our best to keep her as still as we could ; did pretty well… only took two tries to get the x-ray.
Smiley Face

Nurse came back to tell us the Doctor was waiting to see the results and asked if there was something he could do for us. OMG, PLEASE get something to help relax her; obviously the Ativan was doing nothing.  Again we waited and waited and waited…Finally, I asked my husband to take control of Kaet, I was going to see what the heck was going on…

As I approached the nurses’ station, I saw, the Doctor, the nurse and two interns/assistants (not really sure) chatting.  Immediately the nurse responded with “we are waiting for the morphine to come up and the Doctor is just looking at the x-ray.”  The Doctor then stood and came over to explain the nature of the fracture and that she had a call in to Kaet’s orthopedic surgeon to see how he wanted to handle it. 

I went back to the room to help my husband again while we waited for the morphine.  I explained to him that Kaet’s Ortho was not on call this weekend, but his associate and the ER Doctor was waiting to hear back.  As soon as I knew it was the Doctor’s associate, I knew we were just going to be sent home and told to go see the Doctor tomorrow. – BINGO! – ½ hr later the Doctor came in to tell me what I already knew!  During the wait, the nurse did bring the morphine, so Kaet was finally trying to calm down, but having difficulty getting her breathe as she worked herself up too far.  Her lips kept turning blue as she tried to suck air into her nose (she couldn’t get her breathing pattern straight) and kept getting scared and then hold her breath. 

Above: Kaet peers over at her mom during horseback riding, Oct. 2010.

Finally the morphine kicked in and they were able to bandage her arm around her torso to help keep her from moving it.  Kaet was OUT!
Smiley Face
  And we were on our way home with Rx for morphine in hand to help get us through the night. 

As I sit here writing this, I listen to my girl moaning in discomfort, but finally “relaxed.”  Tomorrow we will head to the Orthopedic and see what the prognosis will be.  I do know however, at Kaet’s last checkup we had already discussed the possibility of this event inevitably occurring (Kaet had bone deformities) and that we would be doing surgery to plate the bone to prevent this from happening again. 

My wish to share is for our special needs kids to be treated just that and not be cared for following  “normal” protocol when being taken to the ER – if we are there, there is ABSOLUTELY something wrong and they should be urgently; especially when they are the ONLY patient in that area at the time. Do not just “avoid” us by putting us in the room in the corner and shut the door. We are there because we need help!!!  - Our kids cannot understand what is happening and cannot be “reasoned” with to remain calm.

It took all had to keep myself strong for my girl; the last thing she needed was mommy breaking down on her too.

"Patient Rights: As a Patient, you have the right to:
  • Receive considerate and respectful care.
  • Expect reasonable access to and continuity of care...."
By Christine


Tara Jenner said...

My heart goes out to you and your daughter. What a nerve wracking situation. My husband is a pain medicine doctor and I am so blessed that he spends the time to pray with his patients and find out what is really troubling them rather than just running a conveyor belt treatment approach. When people are in pain (and that includes parents who are in emotional pain watching their child suffer) extra care is definitely needed to help first consol and reassure that they will be helped and treated respectfully and with compassion. I would strongly recommend that you contact the patient advocacy office and let them know that sensitivity training is absolutely needed.

My daughter has SPD and if anyone gets near her with a Band-Aid she really starts to vibrate as she knows its removal will feel like someone is trying to skin her alive. She is, fortunately, very articulate (and fast enough to get away if they approach) so she can explain that she only wants pressure or gauze and no- stick wrap. Her “over-reactions” are often seen as ‘drama’ and ‘attention seeking’ by those who don’t understand and it is very frustrating for her which makes it all the more difficult for her to work on calming herself down. Me, I hate having to explain and justify what is obviously a very real level of discomfort to her even if it would not normally bother other people. I especially get frustrated when dealing with ignorant or uncaring health care professionals who should not only know better, but who are ostensibly in that profession because they have a charter to help people.

Stacie said...

I can envision this situation so clearly and the frustration with the professionals lack of empathy and compassion. I've been in the ER and wondered where everyone could possibly be and when I could locate anyone at all, I only went seaching in desperation, it was nearly impossible to get their attention off computer screens and conversations. I am so glad Christine is willing to share her experiences... perhaps it will help other healthcare professionals be a little more present in their jobs or another special needs parent feel a little stronger in demanding attention.
Tara (find her at right that medicine should be more than simply supplying drugs, but it isn't always so in practice. Riley's neurologist always makes sure that we have all we can foresee needing on hand because one of our goals is to avoid the Emergency Room if at all possible. I do wonder if the hospital advocacy office would find any fault in the treatment offered Kaetlyn? Their staff certainly is not truly interested in aiding their patients. Do special needs parents have the energy left to fight the system... rarely.

Anonymous said...

I can simply not even begin to imagine the journey that you are on with your sweet daughter. Times like you have experienced in the ER where your daughter is not seen promptly must be so very very difficult to handle without getting emotional and upset. Our children are our lives and when they are in pain our natural instinct is to want to make it better. Your story of your visit to the ER opened my eyes to something that I have not experienced but will most definitely show more understanding and compassion should I ever be in the situation where something like this is occurring. Instead of staring or ignoring I will offer help --whatever form that may be. Thanks for a eye opening post. You are such a great mom, I can just hear the love coming through in your writing!

Jane@flightplatformliving said...

oh my, i have been here so many many times! with my gorgeous tilly who just cannot wait for long before extreme behaviours and self harming starts out of frustration! and yet still i regularly am made to sit in line with others happily flicking through magazines as people run 2 hours plus over appointment times, with people refusing to quese jump me as my child tries to smash her face apart! its so so frustrating...i understand totally! bug hugs and well done mommy bear for not loosing it, thats a skill that sometimes evades me on harder runs of behaviour...but i strive every day. much love and thankyou so much for linking up on the forget me not friday. Do you want me to add a face from reeces rainbow to the gallery? jane xxxx