No Badge?

I've been absent for the past few days thanks to a last ditch effort to get in all of Paige's tests and specialist appointments before starting back to school.

Yesterday we headed to the children's hospital to have blood work and a sweat test to check for Cystic Fibrosis. Paige has chronic sinus infections (since she was a baby-yes I know the sinus cavities are not formed then-hers were) and the mucous is very thick. We are seeing a new allergist/immunologist who suggested testing for CF. Although her symptoms (very thin, constipation, chronic sinusitis, etc) can be easily traced back to her early birth, quite a few docs have now suggested we rule out CF.

So, we find ourselves at the lab (in the children's hospital), first thing in the morning. The tech (not sure if she is considered a phlebotomist) was rude. I really hate it when rude medical people work with kids. Her and another tech (who has absolutely nothing to do with our procedure) are chatting about their friends and the "wild night out" they had a few days ago. She never once introduced herself. I'm so put off (after only 2 minutes) that I look up to see her badge and make a mental note of her name. Yes, I was formulating my letter as I sat there and it wasn't going to be nice. One problem... no badge. I was surprised since the hospital has posters all over the hallways instructing you to make sure all personnel have a badge. So, I nicely (honestly) asked if they did away with their badge system. She got quite rude and explained that she slept at her mothers house last night and forgot her badge.

Now it's finally time for Paige to have the sweat test. Paige is an excellent patient. She does what she is told without any argument-no matter what is being done to her. Her ONLY request is that you tell her what you are going to do, step by step, before you touch her. I don't think it's too much to ask. Paige then asks the tech, "Can you please just tell me what you are going to do, before you do it?" The tech rolled her eyes at Paige and started to do the procedure-without explaining! ARGH! The copper plates are placed on her arm and the machine is turned on. Paige only flinches and the woman rolls her eyes again! Mind you, Paige has not even made a noise.

When the sweat test is over it's time to have the blood test. Paige sits on my lap, offers her arm (she is a pro-having over 100 blood tests) and asks, "Are you going to use a butterfly needle?" The tech doesn't even acknowledge Paige. When Paige sees the full tray of vials she asks (with a trembly voice) "do you have to take that much blood today?" The tech laughed at her! Paige asked her, once again, to please say each step out loud. The tech wipes down her arm and sticks her with the needle. No warning. Paige still sat there, without even flinching. When she was done the tech just walked out of the room.

No offer of a sticker for the best patient in the world.

No offer of praise for the best patient in the world.

Nothing.

How convenient that she wasn't wearing her badge. I'll still be making a phone call next week, when Paige is back in school and I can be free with my words.

If you are in the medical profession and can't stand kids... please stay away from the children's hospitals!

At age 2...

Since so much emphasis is put on clinic follow up studies that only track preemies through age 2, I thought it would be interesting to post about my daughter at age 2. The following was written on her clinic discharge sheet.

"Premature girl born at 25.5 weeks gestation, 805 grams, 13" long. Current age is 24.1 months. There is no sign of any gross motor delay and only a slight fine motor delay. Although speech is limited, child uses sign language to communicate and therefore was able to demonstrate adequate language skills. Parents report that child is hardly sick with any colds. Parents also report child has chronic constipation. Information was given and parents were instructed to increase water and fruit."

No further therapy recommended. No further follow up is needed."

Ah, what a nice age that was. It's true, she was hardly sick. Many doctors commented on how healthy she appeared to be. She could not put 2 words together either by speaking or signing. I still wonder how they felt she had adequate language skills. The constipation comment still kills me to this day. I found it quite interesting that the constipation issue started in the NICU (where she was fed breatmilk and formula) but the clinic felt that it was our fault and instructed us to give more water and fruit!

Age 3...
diagnosed with severe sensory integration dysfunction,
still could not put 2 words together
diagnosed with severe anxiety disorder
diagnosed with PDD-Nos
self harming behavior
could barely bend legs because of CP
had bilateral hernia repair
started on MiraLAX for constipation

Age 4...
1 week before turning 4 she had her first seizure
could now speak on an 8 year old level
lost ability to walk long distances because of fatigue
sensory issues worsened
began meds for anxiety disorder but it only caused rages-she tried to pull out her eyeball
had many procedures to asses reflux
diagnosed with failure to thrive due to weight
diagnosed with GERD
chronic sinus infections

Age 5...
could not function in kindergarten due to fine motor delay
sensory issues worsened

Age 6...
finally got a diagnosis of CP
had tonsils and adenoids removed to open airway
outsiders began noticing her social differences

Age 7...
had so many GI procedures that I lost count
multiple MRI's to determine other possible causes of leg pain
tried to kill herself
self harming behavior
yellow adult teeth

Age 8...
diagnosed with OCD
started on meds again for anxiety disorder
socially is an outcast
will be getting palatal expander

I'm sure I have forgotten some.

Age 2 was looking pretty good!

I would love to hear from other preemie parents as to what issues were present at age 2 and which ones did not show up until later.