Well, we (Ivey and I) are sitting at Emory again today. It's kinda weird being on another hospital campus other than Scottish Rite. But this makes the fifth week in a row, or is it six, that we have made this trek, so it is starting to settle in as part of our normal.
For those who are part of daily lives they are aware that we have entered into a new medical phase with Ivey. And to be honest no one is really certain exactly what is going on - if you were to ask any of them – because well, we aren't exactly sure what's up these days.
Here's what we do know definitely. Back in February Ivey spent some time in the hospital due to her seizures. Those little monsters have never been controlled, but they hit an all time high which earned us a luxury stay at Scottish Rite. While there two separate video EEG's were performed. You see even before the admittance, a CT scan and MRI had been performed. Ivey's craniofacial surgeon had the CT ran. Her neurologist the MRI. Both physicians called me on the same day within hours of one another wanting to have her referred to a neurosurgeon. Let's just say that was a bad day. Anywho, one video was scheduled. Ivey just got herself admitted before the scheduled hospital stay and an extra video.
With me so far?
While admitted Ivey spiked a nasty little fever to which the neurologist called in an infectious disease doc. Blood work was drawn. Results were found. Ivey is producing very low levels of antibodies. (We'll get back to the neuro stuff in a minute.) Not surprising, so many parts of Ivey are compromised – we hope this is it for the immune system.
So for the past couple of months we (Ivey and I) have been burning up the roads between home and Atlanta. One day Scottish Rite – the next Emory –some days both- several times a week.
To treat her low antibodies Ivey started IVIg then switched to Sub Q. These are infusions with human antibodies. The antibodies are taken from the plasma donated from all of you. More reason to give blood – Ivey needs it. The difference between the two, IVIg is every few weeks and takes several hours to infuse intravenously. Sub Q is weekly and infused by a needle inserted into her inner thigh. Both have been horrible for her. Leave it to Ivey to have the side effects that are RARE among the RARE.
Luckily the new immunologist now added to our list of docs believed our horror story. So today we are switching back to IVIg and trying a few things up her sleeve to see if it works. If not, Ivey may not be a candidate. If this does work, this is something Ivey will receive for the rest of her life.
Now – this is where my background comes into play. I'm a science geek. In college I majored in Biology and minored in chemistry. So in all of this time with Ivey I can semi hang in conversations and follow where our docs are going- most of the time. Like when the doc started talking about antibodies and IGg and t-cells, etc I could at least understand where we were in the conversation. But it NEVER fails; they take some fork in the road and lose me. But poor Matt is a business person – he doesn't get out of the starting gate sometimes, not all of the time, just sometimes. I at least get to the first curve on the race track before I pitter out.
Anyway – I'll be quite frank with all of you. These infusions have been hell on Ivey. Literally. She has been in pain for a period of time after each infusion. Pain that I haven't seen since her trac. What she has been going through for the last month is not a quality of life that we can endure her to. So we are trying everything possible – and if it doesn't work – she may not be able to receive these treatments.
The time in between treatments she has been healthier than ever. She even gained those 4 pounds. Her seizures are still going, but they are shorter and her Diastat in working – no ER visits with them since the IVIg started. All a plus.
As for the neurosurgeon – he has seen her too. Confirmed what the craniofacial surgeon caught on the CT scan. All of the sutures of her skull, except for the two at the base of her skull, have begun to prematurely close. For now though he wants to monitor her for a while. See if her skull grows AND if her brain is growing with it. Then we will talk options – surgery being one of them. Ivey has microcephaly and this is a contributing factor.
But from the MRI standpoint, there are some quirky areas in her brain that we are concerned about. Everyone will watch that too.
She is a complicated piece of artwork.
I've got some time on my hands today – hours of it – so fire away questions, if you have any.
And now I'm going back to start posting birthday pictures for everyone to see!!!
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