The Princess and the Pea…So What Now?

I’ve been meaning to update for days!  Sorry to have left you all in the dark post-op.  It’s just been a big adjustment, as you can imagine, and I’ve been very tired at night, which is generally when I do my posting.  I know many of you are wondering how it’s been going and how everything went, so I’ll do my best to lay everything out here.

Whew!  Surgery is done!  Hopefully by now you know that Clara’s surgery on the 9th was successful and she has been at home since Tuesday afternoon, the 10th.  Dr. Myseros said that her ventricle was more difficult to poke through than he had anticipated, which made the surgery a little more difficult, but he tried with a few different instruments and was able to do it.  We are so grateful for his wisdom and capable hands…our girl is safe and we were able to avoid a shunt.

She was a trooper through it all.  We spent time before surgery coloring, doing stickers, reading books, and blowing bubbles.  When anesthesia came to bring her back, they played Frozen songs on an ipad and Clara apparently gave everyone a concert.  In recovery afterwards, everyone kept commenting on what a great singer she is and how she knows all the words.  If they knew how much we watch Frozen, they would not be so surprised.

Packed and ready to go. This is what everyone brings for a sleepover at the hospital, right???

This girl is ready! Checking out all the cool stuff in the box she got from the hospital.

Catching bubbles.

Dr. Myseros came in to mark the spot for the incision. “JM” marks the spot!

Reading with Daddy.

Phil and I went back to meet her in recovery.  She woke up pretty easy this time, but that might be because they had given her a little morphine for pain.  We spent time in recovery watching tv and giving her popsicles and ice cream.  I was relieved to see her eyes working normally and to hear her talk, although her voice was raspy from the breathing tube they put in during surgery.  She kept saying, “Oh, it’s so nice that the doctor has ice cream for me!”

Still asleep in recovery.

It’s a rough life watching Little Einsteins while Daddy holds a popsicle in front of your mouth for you to lick.

Then, we moved up to her room in the neurology wing.  With the help of some sweet gifts from friends, we were able to totally princess the place out.  Clara was thrilled!

 She stayed in bed until about 5:00 and then said she wanted to get up.  So we unhooked her from everything and took a short walk down the hallway to see the fish tank and the playroom.  After a bit, though, she came and laid her head down on my lap and it was pretty clear that our little stroll had wiped her out.  We went back to the room and had a bit of a rough time since she was so tired but had to have her vitals taken and get hooked up to everything again before she could go to sleep.  They also put some antibiotic in through her IV, which she hated.  Once that was all over, I laid with her in her bed and she fell asleep and slept all through the night until about 7:30.  Dr. Myseros came in at 5:30 to just check her incision and talk with us.  Everything looked good.  She needed a “fast MRI” (no anesthesia) before we were discharged to make sure everything was looking good in her brain.  Without anesthesia, though, she was totally freaking out and there was no way she would hold still even for 5 mins.  So, Dr. M said that a CT scan would give him the information that he needed.  After the whole MRI ordeal, it took some coaxing to get her to do the CT scan, but she did it and everything looked fine in there.  By this time, we were all pretty exhausted, but we were happy to be going home.

So happy to be reunited!

 She’s been doing well at home…almost TOO well!  Adam and Clara really missed each other, which is cute and all, but it’s been hard to keep their play at a level that is safe for Clara at this point.  She is also sad that she can’t go to the pool, but all the princess gear that she’s received from her friends and family has been a huge hit!  We have to wash her incision every day, and she has become a pro at “washing her owie in the sink.”  Those are probably the biggest challenges: Keeping Adam off of her (and keeping him busy!) and keeping the incision clean.

Watering her special sunflower that she got from her good friends Miss Elisabeth, William, and Sophia.

She missed her friend Jayden while in the hospital, too, so we went for a visit. It was great to get out of the house. She gave Jayden’s dog Roxy a little serenade. Roxy was mildly amused.

So…what now???  She will have a follow up with Dr. Myseros in the middle of July, and she will also have another MRI at that point to see if the ventricles have shrunk at all and to see if fluid is moving through the hole that Dr. M made.  We’ll go from there as far as further follow ups with Dr. M and Dr. Lateef, her neurologist.  We will also be waiting to see if her symptoms (instability, trembling) will subside as the pressure in her brain slowly normalizes.  She will have physical therapy to try to help this process along.  The main objective of the surgery was to relieve the pressure, which would have caused major problems for her as she got older, but we are of course hoping for a reversal of the effects of hydrocephalus.  She will have yearly MRIs for probably the rest of her life to monitor the size and presentation of the tumor.  We pray she will always be the Princess and the Pea, and not the Princess and the “something-bigger.”  So, we’re playing “wait and see” for a few things, but are feeling great that the surgery is over and we will just take the rest step by step.

We can’t thank you all enough for your support.  God has given us a great village!  People continue to ask how they can help…so here are some things:

1. Prayer:  Praise God for his MIGHTY work through all of this – truly amazing!  Although Dr. M does not see this as a cause for concern, we pray that the hole that he made will not seal back up over time.  She is old enough that this shouldn’t happen, but it’s still something that I think about.  Pray that the pressure in her head normalizes and that her symptoms will subside.  Pray that her incision will heal well and that she would not get frustrated by how long it takes and by her limitations during that process.  Pray that future MRIs would not be traumatizing for her, now that she knows all that an MRI entails.  Pray for Adam as he is dealing with all of this, his sister’s limitations as far as outdoor activity, and parents’ low-energy.  Pray for Phil and I to have patience and endurance.  Pray for my physical well being – Baby#3 isn’t getting any smaller, People!  That’s a lot of prayer…maybe if everyone just prays for a couple of those, we’ll be set 🙂

2. Anytime anyone wants to take Adam somewhere…we won’t stop you.  This would be a huge blessing to Phil and me as well as to Adam.

This has been a challenging journey, to say the least, and it’s not over yet, but it has also been a sweet time with the Lord.  We have watched Him work in mighty ways, holding our girl and our family in His hands.  He has often shown His provision through all of you – please know how thankful we are.  I have many thoughts about the emotional/spiritual side of all this, and I may write a separate blog post just to record all of that.  So many gifts in the midst of trial.

 

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