Life is like a box of chocolates…
You NEVER know what you’re gonna get. Amen…..
The past week has been a whirlwind of activity…none of it expected, all of it scary. Let me start at the beginning and bring you all up to speed.
On Sunday 5/15 Taylor woke up in the middle of the night with a massive headache and vomiting. I thought she had a migraine given my history and the fact that she has had two in the past. I gave her Ibuprofen and she tried to sleep. On Monday the headache was just as bad and she was still vomiting, so I took her to the pediatrician. He agree that it was probably a migraine and prescribed some anti-naseau medicine and ibuprofen. Nothing helped. So Tuesday morning I called the pediatrician and he said take her to the ER. We expected that she’d get a shot of Imitrex or something similar for migraines. When we got there they did an MRI and the results were devastating.
Taylor has what is called an AVM (arterial vascular malformation). It is something she was born with. It is not a tumor, not cancer. It is a jumble of arteries and veins that didn’t form properly in-utero. She could have lived her whole life with this and we never would have known. The AVM had started bleeding which is what was causing the headache and vomiting. The ER doctor told us what they found and immediately called Stanford Lucille Packard Children’s Hospital. They sent down a pediatric transport (think ambulance with two ICU nurses). They took us, lights and sirens, to Stanford. We were immediately taken to the pediatric ICU where Taylor stayed until Friday. In the ICU they did another CT and an Angiogram to identify the size and formation of the AVM. It is 4×6 cm (pretty large) on the left side of her brain.
The good news…..she is fine. The bleed didn’t cause any damage, her neurological functions are perfect, she is talking, walking and being her normal self. They know exactly what these tings are and how to treat them. Once it is gone it won’t come back. These are the best Dr. in the world for this. She is in great hands.
On Thursday afternoon she got another major headache while in the ICU. The Doctors weren’t sure what was causing it and they feared the AVM had started to bleed again. So they rushed her in for another CT to see if the bleed had grown. Rick and my Mom were with her as I had gone home to shower and change. My girlfriends had asked me out to lunch and right when I got home Rick called me and said “you had better get back here.” I called Karla and she came back immediately and drove me to Stanford. On our way, we had a flat tire on Hwy 85. Yes…ridiculous, but true. My friend Lori swooped down and picked up us from the center median on 85 and whisked us up to Stanford. When we got there they had confirmed that the bleed had not returned. It was just a headache… something we are going to have to get used to.
Taylor is now out of ICU and on the regular floor. She is taking this all really well. She’s had to miss some really fun stuff and will have to miss more. That makes her sad, which makes her cry, which gives her a headache…sigh.
The hard part – well, actually, all of this is “hard” – but the struggle for us is that her treatment is going to take a while. They need to stop the blood flow to the AVM so they can remove it. To stop it they need to do several procedures similar to Angioplasty, but on the brain. She will have several of these over the next few months…maybe years…that’s the challenge. We have no idea how long this is going to take. They will do as much as they can do safely during each procedure. Then after the procedure we’ll see what the next step is. We have a vision of what will happen but no specifics. As you can imagine Rick and I (two virgos to our core…) are rather uncomfortable with this. But….it is what it is. She is fine and we will get through this.
Rick’s sisters, Deb and Marilynn, are both nurses and have been amazingly helpful as medical translators. They have been with us in all the meetings and rounds with the Doctors. My Mom and my sister, Pamela, have been here to drive everyone around and stay with Taylor while we’re talking with Doctors. Our friends have been so supportive. We don’t know what we’d do without you all.
My plan is to keep you all informed thru the blog. Feel free to comment and Rick or I will get back to you when we can. My sister Pamela and our neighbor Karla are acting as the central points of contact. So if you have questions feel free to reach out to them.
Thanks for your positive thoughts and prayers. We love you all.