Tube free... if only for a minute!

So... for just a moment today Nate looked like a real boy! ;-) haha (We always tease Nate that someday he will be without tubes like a real boy) I can't believe how horrible I was today. We had an appointment for Nate at the doctor because Tuesday when the home health nurse came she thought she heard something in his lungs. He always sounds like his chest rattles because he doesn't swallow his saliva. She had me freaked out. We were in a hurry as usual because I had to pick Kailee up from school and get into town to the doctor. I had taken him off the pump and thought the tubing was all wound up and on top of him in his carseat. I got the kids out of the car and pulled his carseat out of the base and the tube caught. Somehow it had slid down and got caught between the base and the seat. I am always so careful and cautious. But nope... the whole darn tube came out! I was so upset. But at least we were at the doctor and didn't have to sit hours in the ER this time.

I am still just so frustrated with the health care we are getting. I love our pediatrition, but she is a hometown ped who specializes in just that... pediatrics. So this specialized care is a little out there. They ask if I have another tube. Another tube??? Is this something I should be packing around? And nobody has the adhesive remover so that we don't have to pull skin off from the tape. They don't even have the tender grips to hold the tube in place under tegaderm tape. They called every medical supply store in town. Nobody has one!!! She called Dr B at Primary's and they said that they could use the old one since it had only been in a week. I go over to radiology and they get us in and start inserting it under x-ray. Of course he is not happy and is thrashing around. I was sick to my stomach watching and trying to hold him. Finally the tech tells me that it's curled in his stomach. I said, "Great, but it's an NJ tube and can't be in his stomach." They asked ME where it was supposed to be. HUH? So I told them. They ask me if I have the wire thing that is with the new tubes so it can be placed properly. LOOK............. do I look like a medical supply store??? NOT! If I had it all I am pretty sure I would have offered it up. So they had to go looking to find what they need. Finally it is in place only what do we do to tape it down???? Seriously, this is what they ask me!!! I told them just to give me some tape to temporarily get me out the door and home and I would take care of it.

But, for a few precious moments he was tube free. Cute as a bug and without any trace of a problem. So Kailee and I were snapping pictures on the cell phones in the doctor's office. Hyrum and Kami thought it was great and were up on the table with him giving him loves and kisses without that darn old tube! Oh I can't wait for the day when he is tube-free for good. He is such a precious little man and I want nothing more than to nurse him and pack him around and be, well...just normal. Whatever that is!!!