Lizzie's Journey

Moving Right Along

Things around here have been medically dull, which makes me incredibly happy! We've had 2 normal weeks with no doctors, no fevers and no thrush. Oh happy days!!! This week it's back to the grind, with a few doctor's visits scheduled, but we are expecting all good reports. If everything turns out as planned, we are hoping to get a 6 month all clear. *crosses fingers* We've never been more than 12 weeks without some type of appointment, so 6 months would be pretty cool. I'd love to be able to give her an extended break before we start over with all the heavy duty testing next spring.

I really enjoy talking with other parents, and by doing so, lately I've realized how truly lucky we are. I hear so many parents talk about the fears that their children have when undergoing procedures, and how traumatic doctor's visits can be. I'm so thankful that Lizzie doesn't have those fears. She loves her doctors, and it has simply become a part of her life. Too be honest, her "medical expertise" has brought a lot of humor into our home. Here's a few examples:

Lizzie got a toy medical kit recently, and man has she had a ball. The very first day, she got it out and immediately went to work "doctoring" herself. I watched her giving herself a shot, and was amused when she kept pushing it over and over. A minute later she brought it to me and said, "mommy this one's broken, it not work", I said sure it does, and I pushed it in and out and showed her on my arm. She tried again, and said, "nope this one don't work, it don't hurt the baby. I throw it in the trash.". LOL! I'm not sure what was funnier, her distaste for a shot that didn't hurt, or the fact that she was intentionally trying to wound herself with a toy shot.

We live in the country, so we don't see a lot of suit and ties around these parts. When big brother put on his tie for a date night with mom, Lizzie jumped up and down clapping saying, "look brother's a doctor!". Now anyone in a tie is a doctor, and she insists on wearing one herself when playing with her kit.

Last week she discovered that her bunny rabbit had no belly button. She immediately ran to get her medical kit so that she could do "surgery" to fix this problem. I asked her why he needed a belly button, and she informed me that "he needs to go pee-pee mama". Talk about bitter sweet. I loved watching her interact with that bunny, assuring him that it would only hurt for a minute, and that she would make him all better. Not only does it remind me of what she has been through, but it also shows me a glimpse of who she will become. She will understand that everyone is different and wonderful in their own way, and that we should offer comfort to the people in our lives. What an amazing thing to be able to pass along to your children, the ideas of acceptance and compassion. I'd like to say I would have passed on those traits regardless of our journey, but having been down this road, I have a better understanding of what those words truly mean. It's amazing how much we learn from our children.

Labels: humor, Update

Immunology Testing

So yesterday was our first visit with immunology. We're not convinced that Lizzie has an immunity problem, but the doctors have decided that we need to rule out immunity issues before moving forward. She technically meets the requirements to be at significant risk for Primary Immunity Defficiency (PID), which include multiple infections, resistant infections that have required hospitalization (as well as 2 pic lines) and recurrent chronic thrush.

While all those factors would generally point you in the direction of PID, there are a lot of factors that would lead you the opposite way as well. The big one being that she is growing and developing so well. She's never had failure to thrive and even through all of her surgeries and infections, she has continued to stay in the top 75-80% on the growth charts. Her infections have been well controlled and relatively easy to treat, and her anatomical defects could also be responsible for many of her problems. As for the thrush, I'm at a loss there, but the constant antibiotics for two years could still be playing a role in her yeast problems.

We were unable to see the immunologist that we had hoped for at the Children's Hospital, so we had to settle for an allergy/asthma specialist that also does initial immunity testing. Too be honest, I was a little concerned about not seeing an immunologist, but our peds assured us that he could run the initial testing needed and we could move forward from there. If the tests come back with abnormal results, we can see another doctor if we need to.

So yesterday was the big day, and most of my fears about not seeing an immunologist were validated. :( The nurse started asking a few allergy related questions, and I let her know that allergies were not a significant issue. She was obviously confused so I told her we were there for immunity testing. She simply said, the doctor will be with you in a minute and walked out. A few minutes later, the doctor came in, asked 2-3 questions and began reading the chart....you know the one he has had for a few weeks... the one explaining why we were there. Grrrrrrr....... A few minutes later he says: well lets see if we have what we need to get the blood work done. They asked how I thought she would do for the blood draw, and I explained that she was used to blood draws and that it would really not be an issue for her. Just tell her that the butterfly (needle) would bite and it would hurt for a minute then afterwards she could have a sucker. We've been down this road a time or two ya know?

Well, apparently they were not equipped and seemed uncomfortable, which made me uncomfortable and we decided that we should go to the lab and have it drawn. The doctor agreed and explained that they would take some blood, check for immunity issues and then meet with us in 2 weeks for the results. In other words, I spent an hour for them to tell me NOTHING, ask NOTHING, and do NOTHING. They were completely unprepared despite the referral. All I got was the "she looks really healthy, so I don't expect there to be any problems, so that's good news" comment before we left. Really? Is that your expert opinion? You don't think we've heard that before? We heard it before her first surgery, before her first pic line, her second surgery, her MRI...... the list goes on. What a completely ridiculous thing to say! It's not like we showed up just for fun. We've had two seperate doctors recommend this as our next step.

We finally made it to the lab (late... thanks to terrible directions from the receptionist) and of course Lizzie did great. Not a tear in site. The butterfly bit her, they took 5 viles of blood, she got a sucker. What an amazing little trooper! The nurse was also fabulous!

So now we just wait 2 weeks to see the doctor again. I can hardly wait (yeah, that's sarcasm you're hearing). Maybe he'll have some more wonderful words of wisdom. I hope that he is right, and that everything is fine with her immunity system, but only time will tell. Waiting for these results is not nearly as stressful as some of the others have been, but maybe that's because we're not expecting much from this testing, at least we hope not anyway.

Labels: immunity testing, immunology, infection, thrush, vur