Update on Lisa and Maranda's Appt

Lisa woke up this morning and with a bit of bribing, threats and force I convinced her to eat. She took 5 bites of oatmeal that I forced on her and than later ate a pancake on her own.

Once breakfast was done, we got some bummer news...they put Lisa on isolation. Apparently her loose stools (gross) could be some type of virus that would put the other kids on chemo at risk. Hmm....perhaps the stool softener the docs prescribed the other day just to be safe is the culprit. Anyway, they are running tests on the samples (ewwwwwwww!!) and should know in 24 hours whether she is a threat to the low-immunity kids. That means we can walk the halls and even go outside...but she can't go to the playroom or touch anything sick kids might also touch until we know what's causing the condition. Fun. I guess this is good practice for the week of isolation we'll be up against with the radiation.

Other than that, things are looking up. She ate both lunch and dinner and had her EKG and Echo cardiogram done. Doctors and I agreed to stop the morphine and only give it to her on demand...I don't think we used it at all today. We are just using magic mouthwash and anti-nausea meds as needed. She's definitely doing much better If all continues to go well, on Thursday, Lisa will get her scan and be released from the hospital afterwards. We will come back and meet with surgeon on Friday and then plan for surgery next week 11/13 as planned.

Lisa hung out with a med buddy while Mike and I took Maranda to her appt. with the neurosurgeon. He confirmed that the chiari malformation caused they syrinx (the cyst in her spinal column) and the pressure from this caused the scoliosis. The solution...surgery....which 9/10 times will fix the syrinx problem and arrest the scoliosis. So, I won't write my own emotions into this...I'll give you the facts as I understand them and let you form your own conclusions. The surgery takes 3-4 hours and these are the steps as described to us....

The surgery is performed under general anesthesia. An area of hair about 2 inches wide is shaved at the back of the head (Maranda will be able to keep the rest of her hair so it will probably cover up the shaving/incision spot). A straight incision is created from the occipital area at the back of the head to upper neck. Bone is removed at the base of the back of the skull and from the back part of the cervical one (C1) vertebrae.

They will then open up the dura, the outer covering of the brain, to assess the position of the cerebellar tonsils, the degree of crowding and the drainage path for spinal fluid. If necessary, the tips of the cerebellar tonsils are cauterized to create more room in the area, remove the crowding, and allow more normal flow of spinal fluid. A patch of tissue is then sewn to the edges of the open dura to enlarge the dural sac. The tissues are then closed with stitches and staples are used to close the skin.

After surgery, there will be a one-night stay in ICU for close observation. The area of the neck incision is generally stiff and sore (really sore!) after surgery. Pain medication is usually given with a patient-controlled infusion machine. Generally, you may sit in a chair by the following day and walk with assistance. The hospital stay is generally 2 to 3 days.

Risks of surgery include infection (1/100), leakage of spinal fluid (1/50) and neurological injury such as hemorrhage, brain damage or stroke (very unlikely).

So...that's the info we received today. It seems a bit unreal and much more frightening when I'm typing it than it was having the doctors explain it. They are so calm and matter-of-fact that they make it seem like this is a common, everyday occurrence. Doc says he does 25 of these surgeries a year...that doesn't seem like a whole lot. I pray that the doctors have the skills to match their confidence and that Maranda comes out of this surgery better than when she went in.

We are looking to coordinate Maranda's surgery with one of Lisa's stay...it's a little tough because Lisa's stays can very easily be thrown off. We are aiming to schedule Maranda's surgery for sometime in the first two weeks of December, hopefully to coincide with Lisa's radiation treatment....UGH!!