Thanks so much to all who prayed for Polly’s angiography test yesterday. I’m happy to report she got through the test stroke and seizure free and came out of anesthesia fairly well. Of course, she was mad that she was pinned down for four hours. She wasn’t allowed to move the leg the catheter went through for the test. I was able to be up at the hospital with Sergei when she woke up. I came back home around 6:30 to to be with the other girls (thanks, Jessica, for helping us out with childcare!).
Sergei and Polly came home from the hospital around 9pm.
So now, we need to hear the results from her doctor and plan the first surgery.
Will keep you all updated.
I fell asleep last night cuddling with Polly. After singing ‘Happy Birthday’ to almost everyone we know and love she drifting off and I thanked God for getting us through this stretch.
This weekend I was grouchy. I tried not to be…I prayed and cleaned, did yoga and attempted to interact with the family…but my stomach was uneasy. I just felt mad.
Today I got a call from Children’s Memorial Hospital regarding Polly’s test that will take place tomorrow at 12:30pm. As I sifted through details on the phone with the nurse; no solids after midnight, no drinks after 9:30am, yes to medications, no to aspirin, it dawned on me that my grouchy attitude started last Friday and has become more pronounced up until today. On the phone with the nurse, realizing that Polly is back in the hospital tomorrow for a rather involved, possibly dangerous test, I felt the tears come.
I don’t want Polly to have to go through all of this (*this being Moyamoya, the strokes, the invasive tests, the surgeries, possible complications from all of the above.) In that same breath I know it’s not about what I want but who knew you could ever care so much for another soul.
Tomorrow is a part to this Moyamoya puzzle. There’s no way I can adequately explain what angiography is, so I’m going to site Dr. Michael Scott (yes, we like The Office TV show and the fact that the Dr. and the main character’s name is the same brought about some much needed humor during our first week researching MM), the leading surgeon out of Children’s Hospital Boston specializing in Moyamoya.
“Because we need to know flow patterns of blood around the brain, and also to determine whether any blood flow is getting to the brain from arteries outside the skull, all patients need to undergo formal cerebral arteriography (or angiography). This test involves the placement of a small tube (“catheter”) through an artery in the groin up to the neck where its tip is placed in the individual blood vessels supplying the brain, x-ray visible dye is injected, and x-ray pictures taken. This part of the diagnostic evaluation is extremely important in planning the surgery and estimating its risk. “
So that’s what Polly is having done tomorrow. The nurse told us that they will observe her for 23 hours after she comes out of anesthesia so it’s another Marchenko sleep over at the hospital tomorrow night.
We so appreciate prayers for Polly once again. This test can be dangerous. Strokes and seizures can happen during and after the test. And Polly already figured out from a few weeks ago that she doesn’t like hospitals.
Polly’s been so much fun to be with lately. She repeats everything you say (especially the last word of the sentence, BEWARE). And recently her favorite word is “awesome” and when asked a question, most of the time her answer is “sure.”
Lord, please keep this awesome little girl safe and brave tomorrow. Help the doctors get the pictures they need to put together a surgery plan. We trust you, God, and are sure that you are in control. I pray these things in Christ’s name, Amen.
I will update you all tomorrow.
Polly is doing well.
It’s hard to believe that a week and a half ago she was using both of her hands to lift up her right leg and move it. As Polly was leaving for school this morning she was practically running out the door.
Looking at her a person would be hard pressed to see that she has Moyamoya and requires pending brain surgery.
Yesterday we took her to outpatient physical therapy at the hospital. The therapist was impressed. Polly’s large gross motor function in her previously paralyzed leg is almost fully back. She encouraged us to work on Polly’s smaller movements, for her to continue to wear her SMOs (feet and ankle braces) and for her to keep moving, which does not seem to be a problem.
Our therapy assignments include making forts under the dinning room table, crawling up and down the stairs and tickling. Really, that’s what we were told. No problem!
So for now, Polly is back to regular life. She doesn’t have a clue that next Wednesday (November 4th) she’ll be under anesthesia for her angiograph (a very involved test that will determine exactly where in her brain surgery needs to take place). After that test, her first surgery date will be set, probably in the middle of November.
In an effort to prepare Polly for her upcoming stints in the hospital, I plan to purchase a play doctor’s kit. We’d like Polly to realize that there are many things at the hospital that are done that do not hurt; blood pressure, temperature, checking reflexes.
If you have any other ideas about how to prepare Polly, I’d love to hear them.
And of course, please continue to pray for her 1) that her little body will stay seizure and stroke free, 2) that God will guard her heart and mind, providing her peace and resilience to adjust to her life in the next few months. Pray for Sergei and me that we will continue to trust God for Polly’s health and ultimately to maintain the understanding that not only is the Lord with us through this experience but that he cares for Polly, so much more than we can even fathom.
I am humbled by all the blogs and messages that have posted Polly’s button reminding us all to pray. I am also attempting to keep the rest of our lives functioning normally; Elaina is going to brownies and Zoya needs to practice her piano. Evie is back on board with her sensory diet and we’ve started her school evaluations now that she is three and has aged out of Early Intervention. It’s challenging as four out of six of us are battling colds (thank God, so far Polly is staying healthy).
Polly has some big shoes to fill, health-wise. So far, so good.
Evangeline is three today!
I have a post up about her birthday at Expecting Evangeline.
Well, we are home and we are waiting…waiting to see what is going to happen. And we are praying…asking God to keep Polly stroke and seizure free until her surgeries in a few weeks.
I’m tickling the kids, taking them for walks, prepping for Evie’s birthday, snapping cute pictures, trying not to gasp too loudly when Polly wobbles or falls down. You know, normal stuff.
What else can we do…but wait and pray…and live?