Grab your favorite beverage as this could be lengthy...
A week ago today(Thursday) we saw the 2nd opinion neurosurgeon in St. Louis who was very nice and very informative. Bottom line is that yes, Kiereney's ventricles are collapsed and she has little spinal fluid protecting her brain from her skull, she is not a candidate for a ventral shunt unless it was a life and death situation because the risk of her having a brain bleed is very high considering her ventricles are collapsed and yes she does need a programmable shunt in her spine.
Unfortunately, this doctor only does ventral shunts and not lumbar peritoneal shunts so he wrote a letter to Kiereney's original neurosurgeon and spoke of what is needed to be done. During this 2nd opinion, we discovered that the neurosurgeon only sent the LAST page of the op report so the neurosurgeon only had what I could tell him went on with her surgery in September.
I called the original neurosurgeon as soon as I left the 2nd opinion neurosurgeon (as in the lobby before we left the building!)and told them about the incomplete op report sent, the fact that we were being sent back to their office and something needed to be done. His nurse told us to come in on Monday.
Now in all fairness, I KNEW the letter would NOT be dictated, typed, sent and received in the time frame from Thursday to Monday but the nurse said come in at 2 on Monday so we did.
And the letter had not arrived.
And they called the office and the letter was in the process of dictation/transcription so it could not be faxed. We waited 2 hours and the original neurosurgeon came into the office.
I was very nice, explained what the other neurosurgeon said needed to be done and the neurosurgeon said, "In 30 years of practice, I have only had 6 pseudotumor cerebri cases and never heard of a programmable LP shunt." (Anyone else hearing Twilight Zone music here and ready to grab Kiereney and run to the nearest exit?)
I assured him they were available because I have come across other patients who have them. He said, "Well if that's what Dr. B says she needs, we'll see if we can find one and put it in." Thinking I need to bone up on my sterile technique as I'm not sure he can read the directions AND put the programmable shunt in at the same time. Yet, what choice do we have? I can't afford and she can't afford(in time and pain) to have to raise money for a different surgeon to put this in, etc. providing we could find one who did LP shunts and who would take her without insurance. Not to mention this is a potential lawsuit in the making so I'm sure no other neurosurgeon would want to touch her. Personally, money can't make up to Kiereney what she has gone through. If they take care of all the bills, then I'll call it even because I know what malpractice suits are doing to the medical community as well as their malpractice insurance rates. Take care of my daughter as that is all I want. This is not a get rich quick scheme.
She has a followup apt. on March 24 and hopefully before then we will have a call from the neurosurgeon saying the letter has been received and we can set a surgery date.
I have concerns on all fronts but mainly WHY has he let my daughter go for almost 3 months with low spinal fluid pressure and not done anything about it? This can't be good for the brain to be unprotected.
And in other news, Kiereney tried out for the CNA program. They chose 10 and she ranked #11. I told her that God answers in three ways...yes, no and wait and this is a wait. She needs to have the surgery and fully recover before she does the program. It is a 6 week program and another one starts in June so I'm hoping she makes that one.
Kelli has a chance to get a job doing the medical billing for an oncology group that is temp to hire so please pray this works out. I could use something going right for a change.
Did I mention that the check from the 3 days that Kelli worked for this same temp agency has been "lost in the mail" and they had to cut her a new one that she is supposed to get today?
I've been off all my main meds for 2 weeks and just got money to get back on them so it's been rough here around the compound.
And we are working on taxes which looks like it should go to our benefit but I'm sure if something can go wrong, it will. I'm beginning to know Murphy's Law on an up front and personal basis---much too much for my comfort zone! :-)
Kelli is taking Kiereney and 2 of the dogs(Katie stays with Grandma) home today and Kelli will come back on Saturday. I'm off Friday and Saturday and will be doing Spring cleaning or at least some of it as I don't know what March will bring with Kiereney and if the Lord's willin' and the creeks don't rise, we will be going to Ft. Sill for Michael's graduation on 29 April so need to clean now. My OCD needs me to clean. And I may share some of it with Kelli when she returns... :-)
Hoping to watch some movies over the next two days, catch up with my TV shows I've recorded and just be.
Have a wonderful weekend and be grateful for what you have and the ability to just breathe.
Keeping all of you in my prayers.