Home Again, Plan Again...

Growing up, my mom would always say this phrase.  It really went in one ear, out the other.. but it's one of those things or key phrases you hear your mother say that sticks with you.  Then one day it makes sense.  And today, it definitely makes sense to me!

Meagan slept well last night. The Ativan did in fact stop her seizing and she got some good rest.  She woke up to eat and was a little fussy, but, otherwise seemed fine.  She only had one seizure in the morning. Lately, besides her usual movements, she has been starting to pull strongly to the right during her seizures.  She will pull her head that way, her eyes will flutter that way, and her mouth will be pulled up that direction (almost looks like you "fish hooked" her mouth).  It is definitely consistent with her having more damage and more seizure activity coming from the left side of her brain.  Today, I also saw another little piece of the puzzle that may be influencing that.

I was asking the Nurse about the MRI results... she said that the Neurologist should be by later on.  I explained to her how our NSG is always so good about showing us the images so we can see the progress Meagan has made.  The nurse jumped up right after that and said "Oh, we have a computer in the hallway.  I can pull up her images for you!" I asked her if that was ok.  She said "Um, it's YOUR child! Of course it's ok! I just can't tell you anything ABOUT the images.. but I can certainly pull them up for you and let you see anything they've written so far!"

Perfect!

So she got the computer from the hallway.  First she looked at Meagan's birth MRI - she was shocked at how awful it looked! I told her... "I know.. it's amazing how far she's come, eh?"  She agreed.  She then pulled up Meagan's MRI from yesterday.  She scrolled down and unfortunately, the full report was NOT in yet... apparently the Neuro-Radiologist wasn't going to be in to fully read and write the full report until later in the afternoon... but there was at least a one-sentence preliminary finding.  She read it to me as the new image popped up:

"Vents smaller - New fluid and hemorrhage in left occipital lobe. Large cyst in posterior fossa region."


Ok, I knew what *some* of that meant. Basically, at this point, the breakdown is:

1. Vents smaller - wonderful!  Meagan's ventricles being enormously enlarged and filled with too much CSF is the problem and what was putting pressure on her brain restricting its growth.  So this is a good thing.  The fact that they are smaller is good. It means less pressure.. less fluid.. more brain. It means her shunt is working so far.

2. New fluid in left occipital lobe.  Well, I'm not really sure what this means - It is something I will have to ask the NSG on Wednesday when we meet with him.... why she has this fluid... what it means...and how we manage it.

3. Large collection of fluid in posterior fossa region:  Well, this isn't really 'new' news.... this showed up as a new thing on her October CT scan.. so it was new as of then. What this tells me is that the fluid is still there.  So on Wednesday, we will discuss this with Dr. R again.. and talk about how we are managing it.  He had mentioned before about either putting in a second shunt, or putting in a second catheter which he would link to her current shunt.... so we'll see what he says.  He may also just keep watching it for a while until it grows or starts to pose more of a problem for Meagan and then do the surgery.  So this is another 'wait and see'

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As far as her seizures go, I had a long talk with the Neurologist before we left the hospital.  He explained to us that he wants to keep Meagan on her current level of Phenobarb while building up the Keppra in her system.  He said he would cut her cold turkey if she was monitored in the hospital for a prolonged time...but since she isn't, he wants to keep it steady until the Keppra is at a good level in her system and then once her seizures seem to be managed by the Keppra level, he will wean the Phenobarb. If we never get to that point, and she still continues to have many seizures, then we will start at square one and see what other drugs or combinations thereof we can try with her. We are somewhat limited now because of not only her age, but, lots of these meds are done by weight... and she is a TINY peanut.  So we may have to wait longer before we try any other meds besides these two she's already on.

So for now, we keep giving her old med...incorporate the new one...and log her seizures... if we see a stabilization or less, we are on the right track. If she has another bad cluster like last night where she won't stop, we unfortunately would have to bring her back to the hospital.  There are rescue medications you can have at home - but - Meagan is just too tiny.  If she needed a rescue med, it would have to be administered in the hospital so they could monitor her.  When she gets a bit bigger, he said they'd be happy to prescribe us a rescue med to keep at home.  So here's hoping we keep seeing improvement. I'd really like to avoid the hospital again for seizures!

Before discharge papers were given to me, Dr. Philbrook, one of the Neurologists came to speak with me again.  He reminded me about calling tomorrow for the MRI results.  He also said that as much as we liked Dr. Z, he'd prefer we go back and start seeing Dr. Cheng again (the Neuro who had helped us with her first video EEG when she was diagnosed with her initial seizures).  He said it would be more helpful to Meagan because he is an Epilepologist and would be much better for Meagan's long term care.  I agreed we needed someone more 'in tune with' a case like Meagan - brain condition and epilepsy - and so I said we'd call Dr. Cheng for our next appointment.  Dr. Philbrook said if we ever had any problems, to please call him as well and since he now knows Meagan, he would be glad to help us.  I felt good about our meeting and about our plan for Meagan's seizures, and I appreciated him helping us so much this weekend.

It was finally time to leave - our nurse came in, unhooked Meagan, took out her IV and also gave us our Keppra prescription.  She then realized it was Sunday and was afraid the pharmacy may have to order the med - so to make sure Meagan didn't miss a dose, she got the doctor to give us enough for 1 1/2 days so we had time to get our pharmacy the prescription. She got us a wagon, helped us load our stuff inside and walked us out.

I was so happy to get home today.  I walked in ready to tackle the laundry that had been to the top of our laundry chute the day I'd left with Meagan - and ready to clean the diapers that had been sitting around.  And what did I find? And empty laundry chute! Clothes put away! The house clean! And the cleaned and dried diapers sitting in a laundry basket.  I had the best husband ever! I then walked into the living room - the first thing I did, of course, is hug my girls so tightly! I missed all of them so much.  They missed me - but they missed Meagan too.  Matter of fact, the first thing my 2 year old said to me when she woke up from her nap was "Where baby??? Where baby??" and she wouldn't calm down until I took her to Meagan and she got to touch her and kiss her.



 When I saw Maura's reaction to Meagan being home, especially Maura being the youngest of the older four and having the least comprehension as to what was going on......I knew that even though Meagan was only 3 months old and has spent 1 1/2 of those months in Children's Hospital, the girls were lonely without her.  Meagan is already an integral part of their lives...and they missed her so much when she was gone! It was great to see. Because if they felt lonely for Meagan, then Meagan definitely felt lonely for her sisters.  My girls together again.  My family together again. And there is NO place better to be. And no better support system to be behind Meagan as we figure out together how to tackle her next set of challenges.    My mom's saying came back into my head.  It made complete  sense to me now.  Yes, we are home again...but we have more plans to make.  Meagan's is a neverending journey.. so while homecoming is a reprieve, we must continue to plan for her care so she can thrive.

I'm confident we'll figure out how to manage Meagan's seizures in the near future. I picture it like the hurdles in a track meet. You run fast...you hit some hurdles.. and you jump over them. Then you keep running and you hit another set of hurdles.. a little higher this time.. but you do your best and jump over them. Sometimes, though,  you fall.  But that's ok. Because you get up, and work on getting over that next, more challenging hurdle.

  This is like Meagan's journey.  She runs to life...and then hits a hurdle. She jumps over it.. and then keeps on running. Sometimes, her hurdles will be higher and harder than her previous ones..and sometimes she will fall.  She may get up and jump over that higher hurdle herself... but sometimes, the hurdle may be too much for Meagan.  It is in those moments of weakness, though, when God and her family will lift her up, hold her high over our heads and get her over that hurdle..no matter how difficult.  All that matters to me is that she keeps on running...because living is what it's all about.

Home Sweet Home.