Ellie Update

It’s been a little over a month since Ellie’s brain surgery and she is doing fantastic.  We were told that the first 3 days after surgery were the most crucial because if she was going to have a stroke it would be most likely to happen then.  But I had also read studies online that stated the first 30 days after surgery were also a time when if a patient was going to have a stroke it was more likely to happen in that time frame.  So, we cruised through what was hopefully the most dangerous period with no major issues.  It does take months for the revascularization to take place and for the new vessels to start transporting the blood and we won’t know for sure if the surgery was successful or not until she has an angiogram in approximately 6 months.

The only issue Ellie has had since her surgery were some high fevers of 103+ degrees.  The first time this happened we called her neurosurgeon and we were told to take her to the Texas Children’s Hospital emergency room.  In the emergency room they did blood work that came back pretty good except that her sodium levels were too low.  This is a common problem people tend to experience after brain surgery but low sodium can increase the risk of a stroke so we pushed Gatorade for a couple days and when she was retested her sodium levels were back to normal.  Besides that, they could find nothing wrong with her that could explain the sudden fever and allowed us to come home from the hospital the next morning.  After that Ellie had several more high fevers that kept her (and us) up all night.  She seemed pretty miserable with these fevers and it affected her appetite as well.  After a couple doctor’s visits and no sign of what could be causing the fevers, they decided that her stroke must have affected the temperature regulation portion of her brain and that as her brain recovered from the stroke the fevers should stop.  Thankfully it appears that theory may have been right because she hasn’t had a fever now in almost 2 weeks.

Ellie had her post-surgery follow up appointment at Texas Children’s on August 18, 2014.  Even though we spent almost 2 weeks at Texas Children’s hospital when Ellie was hospitalized, I only left the hospital one time and I wasn’t the driver.  But Charles was at work for the follow up appointment so it was up to me to get us there.  Unfortunately I got lost driving in the medical center area and during that time Ellie kept making vomit/gagging sounds from her rear facing car seat.  So, while driving around lost, I also had to keep finding places to pull over and check on her.  We had already talked about turning Ellie’s car seat around to face forward so we could keep a closer eye on her and this stressful situation definitely sealed that decision for me.  We realize that young children are safer in a car accident if they are rear facing and we kept Payton rear facing until almost age 3 ½ when she outgrew her rear facing car seat.  But for us right now, we feel more concerned about Ellie’s health than we do with the possibility of getting into a car accident so we are comfortable with this decision even if it’s not what we had ever planned to do.

 Ellie’s follow up appointment went well.  The surgeons are very happy with her progress and everything with her incision looks good.  The last time we had talked to the surgeons they had indicated they wanted to proceed with surgery on the other side of her brain at approximately 6 weeks after the initial surgery.  But at this visit they had changed their minds.  They feel like in order for the surgery to be successful, her brain needs to be somewhat oxygen deprived and “thirsty” for oxygen in order for her brain to then utilize the transplanted blood vessels.  And at this time, the left side of her brain shows the start of Moyamoya disease but overall the blood vessels are still transporting blood effectively. Unfortunately it’s going to be a fine line between waiting long enough for the brain to desire the flow of more oxygen rich blood and waiting too long that could put her at a risk of having another stroke.  For now they are going to monitor this side of her brain to see how fast or slow the disease progresses.  It is said that the disease is progressive in 100% of patients but we can always pray that this isn’t the case for Ellie.  I’ve read that in children the disease usually shows rapid progression within a year’s time and her neurosurgeons do talk as if they expect to perform the second surgery in a matter of months not years.  Ellie will undergo a sedated MRI/MRA at the end of October to check on the disease progression.

 

When Ellie had her stroke she could not move any part of her left arm, shoulder, hand, and couldn’t even fully support her own head.  When your child becomes paralyzed on a side of their body, it is so scary because you just have no idea what (if any) abilities they will regain.  Thankfully by the evening of her stroke she had started to regain movement.  By the time she was ready to go home from Texas Children’s hospital she had regained most of the control of her arm and even some hand functions although she would only use her left hand when strongly encouraged to.  So they advised that we seek outpatient therapy to help her regain the use of her left hand.  Since then she has voluntarily started using her left hand and has regained the majority of her use of the hand.  So much so that therapy has dismissed her and they feel like she will continue to improve on her own!  The only lingering effects are some slight difficulty with fine motor skills and her pointer and middle finger tend to stay in a bent position most of the time.  

Ellie didn’t have a TIA or a “minor stroke”, her MRI indicated that she had a full-fledged stroke.  And yet, looking at her today she is functioning like any other 21 month old.  She walks, she dances, she plays, she says a ton of words, she can count to 6….  We are so proud of her in every way, just as we are very proud of her big sister.  We know we owe God for this miraculous recovery because the outcome of this could have been so much worse.  And we are thankful for the surgery that wouldn’t have even been an option when Charles and I were this age.  From what I can tell online, children who were diagnosed with Moyamoya 30-40 years ago are either no longer alive or are living with severe disabilities due to having numerous strokes.  And here Ellie is expected to live a normal, healthy life, God willing.  That isn’t to say that all patients diagnosed in this day and age are so fortunate because it definitely has to do with how impaired the person becomes due to a stroke or brain hemorrhage prior to surgery and it is still considered a potentially deadly disease but in Ellie’s case we feel very optimistic about her future.  

 

This isn’t to say that we aren’t constantly concerned about her health.  We watched as she had a stroke, we watched as she stopped breathing 3 times and had to be resuscitated, we had to allow our baby to undergo a precarious brain surgery….   These things are going to stick with us and as a result I find myself being far more protective of Ellie than I was before.  And unfortunately I worry about her constantly.  When she spins around in circles like a normal toddler does, I worry she is going to fall and hit her head on the furniture.  When other kids are running around, I worry one of them will plow into her.  When she is sleeping peacefully, I lay my hand on her chest to make sure she is still breathing.  I’m not sure when, if ever, things will ever really feel “normal” again.  Or when I’ll be able to feel like I can breathe easily and reassure myself that, “Oh she will be fine, kids are resilient” like I used to feel before all of this happened.  Because really it’s true, Ellie has proven that she is incredibly resilient.  

Next week the girls will start preschool twice a week for 3 hours a morning.  This is the preschool that Payton attended last school year and absolutely loved it.  Before Ellie’s stroke we had decided that Ellie (and our family) would benefit from her attending school this year as well.  But after everything she went through I was unsure if she would be able to start school so soon after brain surgery.  But when I asked her neurosurgeon she said she felt like it would be wonderful for her to attend school and that it would benefit her social and physical development.  We are excited about the girls starting school but also worry about Ellie.  The list of things she can’t do are the following:  She can’t be hit in the head with any toys, she can’t fall from any height above her normal standing height, she can’t get too hot, she needs to stay well hydrated, and she can’t be allowed to cry hysterically or cry for extended periods of time.  All things that could potentially happen at school.  She has a wonderful teacher and I know she will do everything she can to ensure Ellie’s safety so beyond that we just have to put our faith in God to watch over her which is something we are getting pretty used to doing when it comes to Ellie’s health.  And I have a feeling for the first several days I will be found hanging out in the school hallway, spying in on my baby to make sure she isn’t crying hysterically and is adjusting well.

 We have always been thankful for our beautiful girls but something like this has a way of making you realize just how truly thankful you are.  And I know I said this in my last blog but we are also so thankful for all the support from our family and friends that we continue to receive.  So many people have reached out to help us….. whether praying for us, sending an encouraging word on Facebook, giving us gift cards to help pay for things, sending the girls little presents, bringing us meals, offering to help with Payton…..  We have been overwhelmed with the support and I’m sorry for anyone I haven’t gotten around to thanking individually, because there are a lot of you, but please know how thankful we are!  And a special thank you to my mom who has gone above and beyond to help us in every way possible.  This entire experience would have been even more difficult if it weren’t for her help.  Thank you!!!   And thank you all for being a part of our journey!