Saturday, July 19, 2008

How to get doctors to listen

This is my 200th post - wow - I wish I had something more fun to update on...

When I look at this picture - it's hard to imagine all that is going on in that head of his...

Tanner had an MRI on Wednesday without and with contrast. Preparing your 4-year-old son for an MRI is not such a fun thing - but I have to admit, he was such a trooper about it all. We explained to him that the doctor was going to take pictures of his head with a special camera. We told him he'd be getting an IV (how many 4-year-olds know what an IV is?) and that he'd be asleep when they took the pictures. We also told him that he couldn't eat anything after breakfast.

Wednesday morning, I went to work late and made him waffles, bacon, & yogurt from breakfast. He asked for a snack a few times - but generally was pretty good about not eating. (We were really amazed, Tanner is our eater and will graze all day if given a chance.) Instead of lunch, Tanner got to go to Target and pick out a new toy. He was absolutely shocked that he would get a toy - we've never really indulged him like this beforehand.

At the hospital, he did pretty good. We waited over an hour in the waiting room - and then they took Tanner & I back to get things started. It took 45 minutes to get his history before we went back and he got the laughing gas. It was worse being stranded in that little room than anything else.

After the MRI and while Tanner was waking up, the neurologist came in. Now, let me state a few facts. We got a very quick appointment at St. Louis' insistence with the nuerology staff. When you do this - odds are that you are going to get the newbie or the runt - and neither one may be a good fit for your circumstance. We got the newbie. He came in and told us that this was a cyst (better than cancer), and that it was pretty large. When we asked him what that meant, he said "I don't know, I've never really seen anything like that. You've got an appointment with the neurosurgeon next Monday at 11:30 a.m.".

We went home - and were briefly elated by the good news. Not cancer! Yay! On Thursday, Randy went to pick up a copy of the MRI and results (as "medical parents", we like to keep copies of these sorts of things - especially when coordinating care in different locations). Then - we looked at the MRI.

He's got a really large cyst - 2.7 cm - nearly round. They'd classified it right now as a pineal gland cyst. The pineal gland is only 8 mm - about the size of a pea, while his cyst is nearly the size of a marble. Having no good avenues for information, we turned to our friend, Google.

Pineal cysts are actually quite common (good news!) and usually they are asymptomatic and don't need to be treated (yay!). But, they are usually much, much smaller (less than 1 cm). Everything that I saw that referred to a cyst of this size required surgical treatment (either drainage or removal). And this cyst - smack dab in the middle of the brain - not easy to get to... So, the nightmare started again.

On Friday, we woke up determined to get some answers - because we both knew that we couldn't make it through the weekend without some answers. We are so very blessed to have a transplant center that takes the best care of us. Even though Tanner's liver functions are 100% normal, and this isn't a "liver thing" - St. Louis has been beside us the entire time. They've done research - and they are currently having his MRI reviewed by their radiology and neurosurgery team. Very comforting since we know that St. Louis is one of the top Neurosurgery teams in the United States.

But, I also decided that we were being seen in Colorado - and they needed to give us the same level of care. I managed to get ahold of the Neurosurgeon's nurse on Friday - I explained to her what had happened, that we had been given very little information, and how unimpressed we were with the neurologist. She was wonderful - considerate, helpful, and she promised we would talk to someone today.

The neurosurgeon called Randy Friday early afternoon. He had only had a brief chance to review Tanner's MRI and he hadn't measured it himself. At this time, based on the information he had, he is leaning towards monitoring it in the short term - but we'll know more on Monday. He feels strongly that this is only a cyst - and is not cancerous. He does not think it is related to the dizzy spells that Tanner has been experiencing (they are mostly resolved now).

We've able to take a deep breath this weekend - but we know this fight isn't over. And, we also know, that regardless if it means traveling to St. Louis or Baltimore or staying here in Denver, we're going to do what is right for our son.

Through all of this, Tanner continues to be my hero. He held perfectly still for the CT, he hardly complained about going without food for the MRI, and he was (as he always is) the ideal patient. He continues to laugh, smile, and give us his "moon hugs" and brings us so much joy.

1 comment:

Laurie said...

I love you, Tanner. You're my hero!!