At the opthamologist we learned that while Morgan's eyes are improving, her vision is still a little blurry. Her right eye is still a bit worse than the left as well, so it is back to wearing glasses. At the GI doctor we were told that part of Morgan's reflux problem could be that food is not passing through her system fast enough and not so much an acid reflux problem, however, the doctor wanted to be sure. She decided to order a PH acid reflux test that requires a nasal catheder for 24 hours.
So this is kinda where my horrible day begins. Donna and I spent hours with Morgan on Thursday searching for eye glasses. Now that we have vision coverage for her and she is in school we wanted to be sure to get her a "good" pair of glasses and not just go to the one hour place. I also wanted to try to get her the ones that wrap around the ears (cable temples) so they would stay put and we wouldn't need the tether we used to use. So, we went to countless places and found that no one carried what we needed in stock. A few places offered to order some in (no obligation) so we could try out the frames.
One place called this morning to let me know the frames they had ordered had arrived and we could come in at anytime to try them on. So, after picking Morgan up from school we went home for a quick lunch and then took off to meet up with Donna to check out the glasses.
Totally adorable right?
The glasses looked cute and fit well. Of course when we sat down to start the paperwork to order them is when my day started taking a turn for the worse. I was just so frustrated. Apparently having vision insurance really doesn't mean anything. I mean why do we pay this monthly payment to then have to turn around and still pay over $200 for a pair of glasses? I was just so mad, but what could I do. We had searched all over town and there weren't any other glasses that would fit Morgan's face ( I should say head, it is rather large) and that had the cable temples. Reluctantly I decided we didn't really have any other options, so I placed the order.
Totally fed up with the idea of paying so much for a stinking pair of glasses when we have insurance (mind you last time I bought her two pairs for $120 with no insurance, of course it was from the one hour mall people) we loaded Morgan and headed to the GI doctors. Today was the day we would be getting started with the 24 hour reflux test.
I hadn't told Morgan where we were going or why thinking that was what was best for her. I was afraid that she would freak out if I told her she would be getting a small tube put through her nose and down her esophagus. I thought, this will be no big deal, she will be fine. No reason to panic her. I thought this because this is pretty much what the doctor had told Donna and David. Now remember, I was not there for the appointment, but the way they relayed it to me is that the doctor said they would put a tiny tube (almost like the size of a hair) through her nose and down into the esophagus just above the stomach. They would then tape it really well against her check, behind her ear, and down her back. She would have a small machine attached to the end to make recordings. So, with that being said I thought no big deal. We should probably keep her home from school just to be safe but this will be easy. I pictured the machine being small like an ipod and thought it would be taped right to her side.
Boy was I wrong. It was/is HORRIBLE! First of all, the doctor didn't even come in so I never had the chance to meet her. There were two nurses that came in to insert the tube. I had to hold Morgan (which I wanted to do so I could be there for her) down, but it was horrible. She was squirming with all her might trying to get away so I had to lie down over her. I hid my eyes because I couldn't bare to watch it. She was screaming, and gagging, and chocking. It seemed like it took them forever to get the tube inserted. Then, once it was finally in they did the worst job taping it. Morgan was instantly grabbing and trying to yank the tube out. I was doing everything I could to hold her arms down and try to get the tape better. Because she was crying so hard and had tears running down her face the tape was not wanting to stick. The nurses solution was to hand me a roll of tape and she told me to try tapping it better once we got home and she was calmed down. I was so mad. I thought yeah right. Do you realize we have a 40 minute car drive home. This thing is never going to last. The nurse actually said that they didn't really expect it to last. She said that most times the kids pull them out, even when they do them in the hospital. Oh, that's comforting. To make matters worse this "small" machine that was going to be connected at the end is not small at all (at least in ipod standards) and they barely taped the tube to her. So here we are with a screaming child, a nose tube hardly held in the nose, and a long tube with a machine attached trying to get out to the car.
Once outside Donna and I were able to get Morgan to calm down a bit and then we had to try to figure out how to get her in the carseat without snagging the tube and machine on something. Once she was in we then had to also figure out how to place the machine and extra tubing so that it wouldn't fall and slip out while driving. We ended up having to tuck it up and behind her carseat.
Totally fed up with the idea of paying so much for a stinking pair of glasses when we have insurance (mind you last time I bought her two pairs for $120 with no insurance, of course it was from the one hour mall people) we loaded Morgan and headed to the GI doctors. Today was the day we would be getting started with the 24 hour reflux test.
I hadn't told Morgan where we were going or why thinking that was what was best for her. I was afraid that she would freak out if I told her she would be getting a small tube put through her nose and down her esophagus. I thought, this will be no big deal, she will be fine. No reason to panic her. I thought this because this is pretty much what the doctor had told Donna and David. Now remember, I was not there for the appointment, but the way they relayed it to me is that the doctor said they would put a tiny tube (almost like the size of a hair) through her nose and down into the esophagus just above the stomach. They would then tape it really well against her check, behind her ear, and down her back. She would have a small machine attached to the end to make recordings. So, with that being said I thought no big deal. We should probably keep her home from school just to be safe but this will be easy. I pictured the machine being small like an ipod and thought it would be taped right to her side.
Boy was I wrong. It was/is HORRIBLE! First of all, the doctor didn't even come in so I never had the chance to meet her. There were two nurses that came in to insert the tube. I had to hold Morgan (which I wanted to do so I could be there for her) down, but it was horrible. She was squirming with all her might trying to get away so I had to lie down over her. I hid my eyes because I couldn't bare to watch it. She was screaming, and gagging, and chocking. It seemed like it took them forever to get the tube inserted. Then, once it was finally in they did the worst job taping it. Morgan was instantly grabbing and trying to yank the tube out. I was doing everything I could to hold her arms down and try to get the tape better. Because she was crying so hard and had tears running down her face the tape was not wanting to stick. The nurses solution was to hand me a roll of tape and she told me to try tapping it better once we got home and she was calmed down. I was so mad. I thought yeah right. Do you realize we have a 40 minute car drive home. This thing is never going to last. The nurse actually said that they didn't really expect it to last. She said that most times the kids pull them out, even when they do them in the hospital. Oh, that's comforting. To make matters worse this "small" machine that was going to be connected at the end is not small at all (at least in ipod standards) and they barely taped the tube to her. So here we are with a screaming child, a nose tube hardly held in the nose, and a long tube with a machine attached trying to get out to the car.
Once outside Donna and I were able to get Morgan to calm down a bit and then we had to try to figure out how to get her in the carseat without snagging the tube and machine on something. Once she was in we then had to also figure out how to place the machine and extra tubing so that it wouldn't fall and slip out while driving. We ended up having to tuck it up and behind her carseat.
My brave girl finally calmed down and ready to go home.
I think I watched less of the road driving home than Morgan. I had turned my rear view mirror (I know, totally unsafe) to point directly at Morgan so I could see clearly if she made an attempt to pull out the tube. She actually only went for it a few times and as soon as I said "no, don't touch it please" Morgan stopped. She is such a good kid.
So we survived the car trip home without losing the tube. I knew I needed to try to tape the tube better now that she was calm. Since she was supposed to try to keep this thing in for the next 24 hours I decided to just change her outfit for the night and then tape it. I also decided that I would just go ahead and put her in a comfy outfit that she could both sleep in and play in all day tomorrow. I wasn't going to mess with multiple wardrobe changes. So with a little finesse we got the old outfit off, more tape on, and new clothes. It was then time to have some dinner because I was going to have to rush out for a preschool PTA meeting as soon as David came home.
By this time Morgan was getting over the tube. She even smiled a few times.
Morgan was getting used to the tube and was only occasionally telling me that her nose hurt. However, as soon as she tried eating her favorite dinner, meatball subs, she started screaming again. Again, those stupid people lied to us. They said she could eat a normal diet and not to change anything. Well, Morgan was not having it. Anything with any kind of substance that she tried bread, meat, cheese, carrots, pears, she screamed. The only thing I could get her to swallow without complaining was some pudding. (hmmm, I wonder if she was just playing me).
So after a meal of pudding Morgan and I ended up heading to the PTA meeting together. David had been stuck in a meeting and wasn't going to get home in time. He would meet us at the preschool to pick her up. Despite having the tube and lovely machine to tote around Morgan was so happy to be going to school. She sat joyfully playing playdough with two other little girls until her Daddy arrived.
So.....it is now after 10. I am exhausted. It was been a horrible day and I just want to go to bed....but I can't. Instead all I can do is sit here watching my little girl sleep. Feeling awful for what I put her through today and worried that she will wake in the middle of the night and tear out the tube.
So after a meal of pudding Morgan and I ended up heading to the PTA meeting together. David had been stuck in a meeting and wasn't going to get home in time. He would meet us at the preschool to pick her up. Despite having the tube and lovely machine to tote around Morgan was so happy to be going to school. She sat joyfully playing playdough with two other little girls until her Daddy arrived.
So.....it is now after 10. I am exhausted. It was been a horrible day and I just want to go to bed....but I can't. Instead all I can do is sit here watching my little girl sleep. Feeling awful for what I put her through today and worried that she will wake in the middle of the night and tear out the tube.
The not so little machine that gets to follow Morgan around for the next day. She has taken to calling it her "fancy purse."
Our Sleeping Beauty. She is such a brave and amazing little girl. She puts up with so much and is so resilient. And amazingly enough, after all I put her through today she still threw her arms around me tonight before drifting off to sleep and whispered "I love you Mommy!"
Love can not even begin to describe how I feel about this little girl.
Love can not even begin to describe how I feel about this little girl.
Oh my sweet Morgan you are such a brave and amazing little girl!!! I am so proud of you!!! All your leaps and bounds you have been making lately!!! You are growing up so fast! We miss you terribly! :)
ReplyDeleteLori - just when you think you can't love any bigger or any fuller, she just does something so genuinely amazing...it just opens up a new section of LOVE in the hearts of all who know her! I was crying at the torment she had to go thru :(. Many hugs to you all!!!!