The eye of the storm

Sunday mornings can be a chaotic peaceful in our house. On a normal Sunday morning, Matt and I are crashing. Normally – we don't have a nurse on Saturday nights so we are up watching Ivey and the brutality of that hits right around the sun coming up on Sunday---add to that two boys who wake the roosters up to crow in the morning with no conception of easing into the day. It is obvious to say that our attendance at church since these nurse-less weekends started a few months ago has been sporadic. I am pretty certain – God knows where we are – literally – in all senses of the word.

With that said, we did have one of Ivey's sweet nurses last night since Ivey had extra hours hanging out there from being in the hospital earlier in the week. So I got up this morning, switched places with Ivey's nurse so she could go home, started up a movie for the boys, put our sleeping Ivey in the bed with her sleeping daddy and our sleeping dog, got my flow of caffeine started….and settled here in my chair with the computer. It is calm this morning. And after the whirlwind of events in the past two weeks, it is even more so.

So now I guess I can fill you in on the results of Ivey's hospital stay. (This may get lengthy) (I'll leave out detailed detail to try and keep it short...)

Ivey's seizures had steadily increased since November. So her neurologist order for Ivey to have a MRI in January – her cranial facial surgeon also ordered a CT scan, both hoping to find underlying reasons for the increased seizure activity. In the end, on the same day, both the neurologist and cranial facial surgeon called referring Ivey to a neurosurgeon for evaluation. In the meantime, Ivey's neurologist scheduled for Ivey to have a video EEG to try and determine what is going on in that little head of hers.

The Monday Ivey was admitted into Scottish Rite was full of seizures. While at Scottish Rite, Ivey had two video EEG's was seen by an infectious disease doctor and neurosurgeon. Before Ivey's admittance into the hospital, Matt and I had geared ourselves to not go into shock if neurosurgery was recommended. Because of the results of Ivey's EEG, she is not a candidate for surgery.

We went into the hospital with one outcome in mind; we are home with another.

An infectious disease doctor also saw Ivey while she was admitted. For all you Dr. Rogers's fans, he rivals him! He ran blood work. Ivey had very low titers in her blood for things like pneumococcal, tentanus.etc. All she had been vaccinated for and all should have high levels of antibodies in her blood. He revaccinated her and in one month we will return to his office to check for the titers (levels) of antibodies in Ivey's blood. If the titers are not boosted, then Ivey may not be able to produce antibodies. Ivey will need to go monthly for treatment if that is the case. So let's hope those titers are boosted!
In the meantime, Ivey is on antibiotics.

So the results of her EEG were not what we expected. Neither was her response to an extremely high fever and removal of two of her seizure medications while the EEG's were running. Ivey did not have any seizures. Seriously I am still amazed and dumbfounded. But we think it is due to getting her on antibiotics that kicked a nasty sinus infection that probably never went away even though we had treated it. Little things affect Ivey in big ways. Her immune system is not as developed as ours, so we are always over cautious.

The neurosurgeon did see Ivey.  For a couple of reasons - no need for detail right now - he only wants to monitor her, but no surgery for now.  Yippee.

Okay, so now we are home. Since Ivey did so well – not seizing – in the hospital, Ivey's neurologist decided to discontinue two of Ivey's seizure medications. Yes, I'm a little nervous, but so far so good. She is still on two seizure medications.

So we are not where we thought we would be – we are some place better.
She is coming out of the fog of the medications. She is so much more engaged and HAPPY.

For the bad news. While Ivey was in the hospital Matt called and told me our dog of twelve is having kidney failure. She was our dog before we were married, before babies. She made it through the week so that Ivey and I made it home to be with her too. We told the boys that she was dying yesterday. They are making her weekend very special. We are all turned upside down that we are losing part of our family.

This is going to be a long week.