An Excruciating Day At The Doctor's Office

What a day it has been today! Sometimes, I forget how tiring days like today can be. Darein didn't have to be at her endocrinologist's office today until 9:20am, which meant that we would get to sleep in a little bit. However, by the time I took Shane to work at 3:30am, got home and wasn't tired I only ended up with about an hour of sleep before time to get up again and get Damein ready for school, take my shower and get Darein up and ready for her appointment. Darein knew that she had an appointment today so she knew she would have me on top of everything that she does today. I have to double check with her every single day, make sure that she has washed her hair good, make sure that she has good clean, weather appropriate clothing on, deodorant, teeth brushed well, hearing aids in and meds taken. On doctor appointment days it is especially critical as I sometimes forget to check or ask a few things here and there and then end up embarrassed at the doctor's office as she has most likely forgotten something. However, today was all checked except I forgot to check her socks and she ended up with dirty socks. I always seem to forget something and whatever it is that I seem to forget never seems to be a matter of importance to her. We show up at the doctor's office, everything goes well and she informs me that it didn't even matter that her socks weren't perfectly clean as I was so worried about because he didn't even check. The kid loves jewelry and shoes but could care less about showers, hair or clothes. This can be very frustrating most days. We talked to the doctor about a number of things but overall he was very pleased at how much happier she seemed since the last couple of times he had seen her. She was very happy and very much pain free. We are worried about some possible puberty delay, which I am sure she appreciates me placing on here. As she would say, TMI mom :)However, it is an issue that no matter how delicate we had to address. She was scheduled for several labs including: cortisol levels, electrolyte levels, thyroid levels, estrogen levels, vitamin D deficiency levels and maybe a few more. We told the scheduler that we needed to go to see Suzy at POPS at the hospital. She explained that she had moved to the St. Jude Children's department and was not over at POPS very often. If you have a child that is ill more often than not, you will realize the trauma of a statement like this. Darein has so many medical problems and is such a hard blood draw stick that we hate changing doctors or phlebotomists once we find someone who is good. Suzy is one of those people. The scheduler went ahead and called over there and told us to give it a try by checking into Admissions at St. John's, telling them where we wanted this done and then heading to xray for a bone age scan which helps to assess whether she is getting the right amount of cortisol or not. We headed over to St. John's, checked in and was pleasantly surprised to get to the POPS department and discover Suzy meeting us at the door. She remembered Darein and was very happy to see her and told us that she was still in that department as often as possible and for us to continue to be seen there. We were also greeted by the lady that had to come down and do Darein cystourethrogram a few weeks ago because the regular nurse could not get it. We were thrilled and thought that the blood draw today would be nice and simple. However, they had to wait on orders to get things condensed as much as possible as much blood was needed. Finally about an hour later, they started the process. Darein was unfortunately stuck 6 times between these 2 wonderful nurses. They ended up extremely aggravated as well as Darein. She hurt and we decided that our only option to get the remainder of the blood was to get an arterial blood gas draw. This can only be drawn by an ABG tech or a physician. There happened to be a tech there from that department and he attempted to draw her blood from an artery. After several minutes and a few attempts he was finally successful. Once the blood was drawn we still had to go back downstairs for a bone age xray, 2 1/2 hours later we completed all tests. Shane fortunately had a friend that was getting off of work about the same time as him and brought him over to the hospital to meet us so that we could then leave. We headed to the movie store to return a few items, rent a few items and then headed to the grocery store to pick up stuff for homemade tacos tonight. Once I finally got home, I did a load of dishes and got the kitchen cleaned up and started working on making tacos. Darein took the dogs out and played with them a little bit while dinner was being made. Once dinner was made and ate we decided to watch movies for the rest of the evening. I have to get up and take Shane to work at midnight but other than that we should all be able to sleep in tomorrow and enjoy a nice quiet day though laundry and yard work and other household duties will inevitably call my name. It is hard to imagine that it would be so tiring watching your daughter suffer for an hours worth of lab draws but it is extremely exhausting and then you still have no results at this time and get the pleasure of waiting for those. I don't blame anyone but find it funny when people think that we don't have it so rough because our child is not dying. I want people to realize that there are all kinds of sick kids out there and just because they aren't dying or suffering every day doesn't mean that they don't go through a tremendous amount of effort to get where they are at today. There are definitely kids that are so much better than her and yet there are children who are also much worse off than her too. We pray for all of those children no matter what their circumstances because no matter what is wrong with a chronically ill child, there is always something to be done with them and so much work yet to come. Every single day is a blessing and a challenge in the same sense. We didn't get to go to Hobby Lobby today as Darein wanted to to look for a birthday gift because we were just too tired by the end of the day. We will try maybe once again tomorrow but with ill children you can only hope that your plans work out but have to learn to expect them not to. I am a control freak and once I tell someone that this is what the plan is and that is what is going to happen, I expect nothing less and will nothing short of stopping to make sure it happens. However, you also have to realize at mom your limitations as well as your childs and sometimes those things don't go as planned and so you work towards that goal once again.
I hope all goes well with Darein's tests and we will be waiting now to see whether or not she has to start estrogen and then have another ordeal of things to work on. We learned today that she will see Dr. Roberts, GI doc from KC on January 4, 2010 and then sees her urology surgeon in February 2010. We have a busy beginning of the year next year and still have a dentist to see on Tuesday to see how many sets of braces I have to get between my son and daughter. Overall, Darein is doing well and we continue to work on so many number of issues. I am so proud of her each and every single day. What a brave little girl, even if she isn't dying right now :) Please cherish your children each and every one if you have them and if not then please remember a child in your thoughts and prayers. They are reliant on us as moms and dads and whether we like it or not they totally rely on us to make the best decisions for them. This can be too much some days for most parents. Talk about parents who worry they screwed up with normal healthy children, what a burden we must carry for our special needs children as they need us so much more. When you have a normal child you also have a certain balance to keep so as not to disrupt the balance of attention. God forbid, someone feel left out :) LOL Our children are our future, rely on us and our decisions.
Hope I don't mess up :)