Answers or just more questions

I hesitate to even post this because I still don't know what we are doing yet, but some of you know that we had a conference call with Dr. Warf yesterday, and I don't want to leave you hanging.

First of all, Nate's back looks the same. Clive is still here. The good news is that a couple nights ago, he started walking by himself a little! Yay! He is hunched over and wobbly, but he's walking. And just to recap, the plan was that we go back to see Dr. Tulipan on Monday, and if his back is still the same we would stay there and do the shunt.

It took more than a week to get Nate's records sent to Boston and to set up a conference call with Dr. Warf. By the time we talked, he had seen Nate's latest MRI and all his surgical notes, my email explaining the situation, and a picture of Nate's back. I originally contacted Dr. Warf about the ETV procedure because he uses a different technique than most doctors by including another procedure called a CPC that makes it more successful. Before talking to him, Blake and I researched some of his papers and found he really only does the CPC on infants. So on a child Nate's age, they would do the regular ETV, which more doctors do--but not Dr. Tulipan.

Dr. Warf was very nice to talk to. He's personable and genuinely caring, and he has a very impressive reputation as a neurosurgeon. He seemed to understand what a huge decision this is for us and tried to help me think through all the options. The first thing he said was that he would hate to see a 5 year old get a shunt for a spinal fluid leak. He also admitted that he may be a bit fanatical about trying to avoid shunts, and I said I was too for my own son. His concern with the shunt was that some kids who get a shunt for something like this when they don't need it for hydrocephalus, can then BECOME shunt dependent. So it could be that if we did the shunt and just decided to keep it forever because it wasn't worth another surgery to remove it, the brain could get used to draining the fluid that way, and some of the small aqueducts in Nate's brain could potentially close, and then he'd be dependent on the dang shunt. So if he had a malfunction or something, we'd have all those issues. He thought if we did decide to go the shunt route, we should then go back and remove it a few months down the road. If you wait too long, it can get attached in there, and then you risk a brain bleed when removing it. This has just helped confirm that I want to avoid the shunt if at all possible.

He said he would be happy to treat Nate, but he didn't think it was necessary for us to travel all that way, when there is a neurosurgeon closer to us (Cincinnati) who could do the job. But he told me what he thought his plan of action would be. He would prefer to insert an external shunt/temporary drain to get the fluid intentionally too low. While he was in there, he would test the pressure of the fluid. If Nate did have high pressure (hydrocephalus), which he is not convinced he does because his ventricles look pretty good, then he would do the ETV. THEN he would re-open his back, find the hole, and close it up again. He would leave Nate on the external drain for about a week or so until he thought the back was healing good, then he could remove the drain at the bedside.

So what to do. Well, we could go to Boston for that route. We could get a third opinion in Cincinnati with another doctor that does the ETV, and maybe he would do the same course of action or a different one.  We could ask Dr. Tulipan if he would do the external drain and third back closure, but he would not do the ETV while he was in there if needed.

I called Dr. Tulipan's nurse to get her opinion on what we should do about our appointment on Monday. I told her about my conversation with Dr. Warf, and I said, "I don't know how open to suggestion Dr. Tulipan is ..." and we both laughed. :) She said Dr. T would do whatever I felt was best as long as he didn't think it would endanger Nate. She asked me what my gut was telling me, and I said my gut is saying no shunt. She said I should follow that. But her professional opinion was that I should talk with Dr. Tulipan about all of this before making any decisions about going to a different doctor, and I agree with that. I really, really want to stick with Dr. Tulipan if at all possible. So we are keeping the appointment on Monday, and we'll talk. I can always get Nate's records sent to Cincinnati on Monday. As Dr. Warf says, Nate is not in any kind of emergent danger. We just want this to be over so we can move on.

Nate got out of the house a little today. He's only been out of the house for doctor visits or wagon rides down the street since Labor Day. My friend Kellie invited us to her son's pirates and princesses birthday party, and as I was getting Georgia ready in her princess dress (which she hates), Nate said he really, really wanted to go in his pirate costume. So we figured it out. We put rolled up towels in the car seat so it didn't hurt Clive, and we just helped him a lot. I'm glad we attempted it because it was good for him to get out.

So, we still won't know what we're doing, and I'm taking my dad's advice of just doing nothing until I'm certain what we should do. We're praying for clear answers. I'll try to update more Monday evening.