Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Tuesday, October 11, 2011

It's Been a Week!

It started Monday, there was no school!  The kids were excited to wake up, watch cartoons and then have friends over.  James, Grace and Annie had a blast!  And I was thankful to have some time to get some stuff done that I was putting off to the side.  Monday ended with family game night at which time Annie started throwing a fit.  This is typical so we tried to calm her, laid her on the couch and assumed she was just tired.  That night Annie slept all night which is NOT typical but when it DOES happen we don't complain and take it as a blessing.  Tuesday she woke late (7am) and I didn't get into her room right away, instead I got myself ready as I watched her through the monitor -I heard a funny sound, looked at the monitor and knew instantly that she was throwing up - this is NOT unusual.  Oh boy, now we'll be late, I yelled down to James that he would have to make his and Gracie's breakfast, get himself packed and get shoes and socks on while I gave Annie a bath (Let me just take a second and thank God for my wonderful, independent, easy going, responsible Jamesy!). 

So, Annie gets a bath, we gather everyone into the car and are off to school by 7:45.  I thought it was a little odd that Annie wasn't screaming, squaking or vocalizing super loudly as she usually does but again, I was counting the calm, quiet drive as a blessing.  That is, until, Annie threw up again.  Ugg, alright, I thought, hopefully my dad can take Grace to school, I'll drop her off after I drop James off.

With James and Grace succesfully dropped off I took Annie home, on the way she threw up again.  We got home and first thing I did was put her back into the tub and got her dressed into some comfy Pj's - she'll be spending some time watching movies for sure.  After the bath I got Annie all settled into her comfy spot on the couch with her heated blanket - instantly she was asleep.  "Great" I thought "I'll wash Annie's sheets and get a workout in and then I'll be able to spend the day snuggling with my little girl".  At that moment Annie started throwing up again (glad I put down those towels).  I ran to her, got her limp body into a position so she wouldn't aspirate as she was throwing up and realized, wow, she's REALLY sick.  I threw the laundry in, got Annie some new towels and grabbed the ringing phone - it was my dad, apparently Grace didn't have school today - hmmmm, time to shine up that  "Mother of the Year award".
So my dad drops off sweet Gracie and as I'm in the driveway getting her into the house a car pulls up - "Oh Crap! Totally forgot that Annie's social worker was supposed to come by for her monthly visit". So, I give her the run down and she's fine with coming in the house and braving the airborne germs that may be lingering.  As we are chatting I hear Annie crying, loudly - I run to her side and realize she's crying with her eyes closed - that's weird but really, not that weird - Annie DOES have Rett Syndrome and what would be unthinkable for my typical kiddos is sometimes status quo for Annie.  We go on with our meeting, Annie goes on crying, I ask our social worker (who is a seasoned mommy of 5 with 1 Down Syndrome sweetie) if she thinks this is something that I should be more concerned about, she turns it back on me, feeling confident in my mothers instinct (apparently she didn't see that the mothers award is in the shop being polished).
Immediatly after our social worker leaves Annie throws up again but this time she doesn't even wake up.  OK, now THIS is really weird.  I clean her up only to realize that now she has diarrhea and is still not waking.  I do the thing I always do when I'm freaked out, I call for the second opinion - AKA - Daddy!  Scott says that I should trust my instincts but keep him posted (honestly, doesn't he realize that a call to him means HE needs to make the decision - YES, I realize he has no idea what's going on because he is not here!).  So, I clean Annie up once again, realize Gracie needs to eat lunch (thankfully Gracie follows suit with her big brother and thinks its "fun" to make her own meal) so she prepares her lunch while I throw in another load of laundry and run back up the stairs to pick Annie up who is now completely lifeless and dry heaving without waking, and then, it happens - her eyes POP open and dart to the left, but I can't seem to get her to respond to me, I call her name, shake her, move her face "oh God, this is a seizure".  I wonder if I'm over reacting so of course, I call Scott - he tells me, "hang up and call 911".  I hang up, Annie is now limp and falling asleep, she is breathing and seems to be a bit better but not out of the woods.  Ok, I thought, peds are out to lunch so maybe I should take her to the ER.  I call Scott AGAIN and he says he's already in route on the way home.  When he gets home he takes one look at the little pile of Annie on the couch and says she needs to go to the peds -Yep, I know, however they are closed for lunch right now or else I would have taken her there instead of suggesing the ER.  So, we wait until lunch is over, call and get into the peds - Annie is now so limp and lifeless, she continues to throw up without waking.  We get her into the car and decide she can't even sit in her wheel chair, she's so limp Scott needs to carry her.  Annie's doc comes in and all of a sudden she does the wake up, look to the left but not respond "seizure" thing again.  Our ped says - lets run a pulse OX but I'm afraid you will need to head to Beaumont ER.  We of course do, all the while Annie is still asleep and dry heaving.  We drop Grace off with my mom and head to the ER.
As we walk into the Beaumnot ER  I assume we are there for some IV fluids and just a watch but things quickly turn when I look at our slip and we by pass triage and are written as "Urgent".  I assume this is because of her "chair", people always get bent out of shape when they see a special needs kiddo.  There aren't any beds so we are in the hall for a very short time, the nurses get our history and we are quickly put into the next available "room".  We tell the docs the story and realize, it's now 4pm and Annie is STILL not awake or arrousable, it's obvious the doctors are VERY concerned, they come in to take more info and Annie does it again, she opens her eyes, looks to the left and is unresponsive except now she is twitching..... hard - we tell the docs, "this is what's bothering us" but they are steps ahead of us and have an enteroge in the room in split seconds, giving meds and preping for a spinal tap, they fear Annie has meingitis.  They tell us that was a definate seizure and with the quick onset of symptoms and the inability to awake Annie they are deeply concerned, they have already checked her for the basics and are now concerned that she has meningitis, encephalitis or worse.  They ask if we would consent to a spinal tap.  Scott and I are shocked (we are well aware that most kiddos with Rett Syndrome have seizures so when they happened we thought "well, she DOES have rett"), we ask about pain but we're told that since Annie is unresponsive they don't want to give her further meds to sedate her, we agree to the spinal and to our shock Annie barely flinches, she opens her eyes for seconds but otherwise doesn't really respond.  Then we're moved to the PICU.
We are reequainted with the PICU and introduced to a fantastic nurse.  We settle in for the night realizing that we aren't going anywhere anytime soon.  Annie is now on an IV for rehydration and antibiotics.  Annie sleeps all night long which is NOT like her at all.  The next day she crabs a bit and opens her eyes but just briefly, we and the hospital staff, continue to be very concerned with her behavior.  Tests start coming back and of course there are no answers, everything comes back negative and there is seemingly no cause to Annie's sickness.
sweet Annie opens her eyes.
A quick 40 minute EEG was performed to make sure that Annie wasn't having any more seizures.  As time ticked on Annie got better and better, she became more and more alert and by evening this is what we saw: 
We stayed put for one more night and by Thursday morning it was clear that Annie was completely better.  
We got out of the room and headed to the Children's play area in the hospital.
can you tell that Beaumont has a FANTASTIC playroom?

Our nurse actually came into the play area to let us know that the EEG came back clear and we would be able to leave!  Hooray!  No actual cause was found for Annie's sickness, the thought is that she had some sort of GI virus that hit her fragile body so hard that it caused her to have seizures.  We were sent home with emergency seizure medication and were told that 1 of 3 things would happen - 1. this is the start of seizures for Annie, the vast majority of girls with rett syndrome experience seizures on a regular basis so it's likely this may be the case for Annie.  2. She will be more suseptible to seizures when she is sick. or 3. this was a one time, harsh reaction to terrible virus that came on quickly.  We are choosing to believe #3
A HUGE thank you to every single person at Beaumont Royal Oak.  They took such great care of our sweet little Annie and Scott and I as well.  It's a blessing to know that if, God forbid, we ever need to return to the hospital we will do so with piece of mind that we are in the very best of hands.

This experience has once again reminded me that as much as I want this beautiful little angel, Annie has never and will never be mine.  She belongs to Him.  I am just the person who has the privledge of  loving her and caring for her but I have no control over what happens to her.  God has a perfect plan for her life and she is safely wrapped in His hands.  He will work ALL things for good.  I will continue to fight for her, send her to the very best of doctors, and take the best care of her that I know how but I am also learning how to put my trust in Him.  "For I know the plans I have for you", declares the Lord, "plans to prosper you and and not to harm you, plans to give you hope and a future". Jeremiah 29:11