As many of you already know, last Friday we made the trek to Vancouver with Audrey for yet another appointment at Children’s Hospital.
This trip was for an appointment with a doctor who is extremely specialized in her field and was one we’ve been waiting 7 months for. Answers have seemed to be elusive the past 3 years and we are hoping (mostly praying) that she will hold the key to the answer.
I have a lot of “stuff” to say about everything happening, and I’ll eventually get around to saying it. Today though I’m going to do my best to stick to the facts of the day. Sometimes, as cold as it may sound the facts are all I can handle. They don’t have feelings, they don’t have tears, they don’t have hard, they are static, unchanging, unfeeling – just information.
– Audrey really liked Dr. Hv (not to be confused with our pediatrician Dr. H) she was kind, and smiled easy and put us both at ease right away
– She doesn’t believe that what Audrey has falls under the basic rare conditions that she specializes in. These have been seen and diagnosed multiple times, with some recorded information about them.
– There is a good possibility that what it is, is the rarest of rare, undiagnosed rare. Her words – “It may turn out to be that what is happening with Audrey is a condition/disorder that has never been seen or recorded before”. Uncharted waters.
– The referral to Gastrointestinal or GI has been sent but she’s going to follow up. They are difficult to get in to see and she made it clear that we need to be prepared for a wait on that one.
– After 3 years and many, MANY different doctors she was the first to suggest that maybe we should be seeing Hematology for what is happening in Audrey’s body. She couldn’t understand why exactly we hadn’t been sent there in the first place. Since Audrey is currently (sort of) holding her own and we are going to be seeing GI she’d like to put it on hold. Though she did suggest we talked to our ped Dr. H about it.
– 3 weeks ago Dr. H took Audrey off of her antibiotic to see what would happen. This medication is strong and the longer she is on it the more risk we run of her body becoming resistant to it. That would be a big, BIG problem because to date it is the only medication her body responds to when sick, we need it to keep working.
– Dr. Hv is as hesitant as everyone about Audrey being off her meds. They are our safe guard, they help keep her body healthy and I believe they are part of why she has managed to avoid catching the many bugs floating around. However, she agrees with Dr. H about being cautioned about resistance.
– Word came through 2 weeks go to Children’s that we received the special funding from MSP for some new, super in depth genetic/DNA testing to be done to her urine & blood. This is HUGE, they’ve had her urine and blood samples on ice for 6 months waiting for this funding to come through. We are so thankful it did!
– As always, we need to be careful of what Audrey is in contact with germ wise. Especially with her safety net gone, we have to make sure she’s not exposed to things her body can’t fight. That poses a bigger challenge with each passing day as we also have to allow her to live a normal life.
– Just like everyone else she believes there’s something to find, she just doesn’t know what. And like everyone else she believes our Audrey and her condition(s) are a puzzle but unlike everyone else that doesn’t put her off. She sees “puzzle kids” everyday, and she works with their parents to find answers, solutions and functional ways to live life.
Now it’s a waiting game. Dr. Hv is going to be talking with Dr. H as well as Dr. L to co-ordinate what’s next. We have to wait on the special test results to come back, which is 6 or more months in the making, we wait on the appointment at GI (but let’s face it, I’ll be making phone calls) and we have to see what her body does.