Fall 2013

Fall 2013

Tuesday, May 29, 2012

Tuesday's happenings

We've been here two weeks. It's hard to believe. On May 14, I dropped off a care package to a RR mom who was here at SMH with her daughter. Never ever did I believe that less than 24 hours later, we would be back for our own extended stay with Maia. I understand now how time seems to blur, it feels like we've been here for maybe a week. Anyway... here's what happened today.

The big news is that Neurosurgery and Infectious Diseases have agreed that the Maia's shunt can be replaced tomorrow.  Dr. W (Maia's regular neurosurgeon who has been out of town) stopped by this morning. He said that usually they like to put the shunt in a different location after there has been an infection. He doesn't know yet if it will go in the right or left ventricle. The external drain will be removed at the same time. Antibiotics will continue for approximately 24 hours after the shunt is replaced. We anticipate being in the ICU for a day or so after the revision and then transfer to the general care unit. I think I will actually be sad about leaving behind the wonderful nurses who have cared for Maia (and us) since her admission.

Dr. S (Maia's spina bifida physician) also came by this morning. She's also an adoptive mom of a precious little girl from Russia so I feel a special connection with her. Dr. S had seen Maia at the Bikes for Everybody event the week before her seizure and knows her well. She told me that when she got notification of Maia's hospitalization, she had said "That can't be my Maia!" I lost it when she asked how things were going.

The issue that no one seems to want to talk about is Maia's cognitive and functional status. Dr. W said that from his perspective, Maia should be able to go home within a couple of days as long as she remained stable. One of the other physicians (I think maybe someone from ID, but I can't remember) again commented about Maia being nearly back to her baseline. What????????????  She is SO far from her pre-seizure self that sometimes it doesn't even feel like she's the same child. I thought about that yesterday when I was at home. Yes, she is still my sweet girl. Yes, I still love her with that deep momma's love.  But, she will not come home the Maia that left our house that morning. And I am not the same momma who left the house that day in the ambulance with Maia.

But... me aside for now, Maia is functioning much at the infant level. Her body is quite deconditioned. I held her on my lap for some music therapy this afternoon and she is not able to hold her head up by herself. Although she attempts to move her arms and legs purposefully, Maia is not able to perform any meaningful activities with them. She giggles at times and cries, but this is the extent of her communication with us. I can sense her frustration when she wants to grab something or perhaps try to speak but is unable to. It is heartbreaking to hear her cries of anxiety and stress. Although I try to comfort her, there are times when she is inconsolable. Mark and I both feel so very helpless. The occupational therapist was here this afternoon and we did get Maia up in a supported chair. She was not real thrilled with this, but did quiet down while the therapist sang to her.

I was able to hold Maia for a while this afternoon and she cuddled in close, dozing on my chest for a short time before getting cranky. I treasure those precious moments.

Dr. S is going to inquire about the possibility of inpatient rehabilitation for Maia following her surgery. We are praying this will be an option for her. Although it will require more time in the hospital, the intense therapy may provide additional benefits that she would not have going home with outpatient therapy.

So, that's today's scoop. We are maintaining. Thankful for the support of our friends and family and all of you!


  1. What a difficult time you've had. Praying for her full recovery. She's such a beautiful and precious child!

  2. Thank you for sharing your heart. Mark and I are praying. Right now, yours is the only blog I look at every morning I get up. Right now Maia is the most important and so are you. I'm glad you are updating daily. It's early here. We are on our way to our region. Hugs my friend.

  3. I am praying for Maia's cognitive ability and healing and believing for miracles. Praying for both you and Mark, believing for strength, courage, hope, and patience. I am so sorry you are all having to go through this heartbreaking time in your lives, I wish there were something I could do to make it better or easier. Just know my prayers are with you. Hold onto God, Melanie, He will carry you through this challenging time in your lives. In the most heartbreaking time in my life, my husband's spinal cord injury and his 4month hospital stay, God gave me a strength I would never have had to go through that time on my own. You are children of the King of King's and Lord of Lords, and He will never leave you nor forsake you. He is with you always, you are not going through this alone. Hugs to all of you.
    Jacquelene L.

  4. So glad that Maia's regular docs were able to see her today and they know what Maia's "baseline" is. I pray you are able to get the inpatient rehab. That would make a lot of sense.

    I wish I were closer and could help out somehow. Please know we continue to lift you all up in prayer. The Lord is always good and faithful.

  5. I'm praying for Maia's recovery and for your whole family. You are such an awesome mom and she is such a precious and darling girl.

    And miracles are possible too - and I can think of no one more deserving of one than your Maia!! (I've also witnessed miracles first hand -- one of my very best friends from college had a similarly horrible spinal fluid brain infection and wasn't expected to live. Or if she lived, she'd never regain cognitive function. Or if she did, she'd be in a wheelchair for life. Sara proved EVERYONE wrong -- she lived, her brain survived just fine and she walks just fine too. And to this day -- 15 yrs later is just fine. It is an jonest to goodness miracle!! In fact she's married and has two adorable kids!! Sara's rehab was long and hard, but she's a fighter... and I've a feeling your Maia is too).

    Prayer x 1000000 for a miracle and a speedy recovery!!).

  6. Mark and Melanie,
    I've been praying for you and your precious Maia since she was hospitalized. Your blog is one of the first things I check each morning. We've been in the same position as you, having a child hospitalized for an extended period of time in critical condition. So much of what you write brings back a flood of memories! May God strengthen you and uphold you with His mighty right hand, and may He bring complete healing to Maia. Matthew has also been in my prayers, and I look forward to the post when you are all together as a family. Blessings to you all.
    Holly S

  7. I am with Holly. I check your blog first thing in the morning and right before bed. We are with all of you.

    I have been thinking a lot about the brain's amazing plasticity and how it can heal itself. I love the idea of a post-hospitalization rehab, but remember, the two sides of the brain can compensate for one another when there is disruption.

    I am no expert in this, but know a little, tiny bit about it. I guess I wanted to pass along that bit of hope/reminder that God created our bodies to be amazing, amazing machines capable of repair and healing!

    Prayers your way as always! Love, Jane


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