Fall 2013

Fall 2013

Tuesday, June 19, 2012

Tuesday's happenings

It's been a busy day.  At the beginning of this hospitalization, I somehow had a few moments of thinking that I might have some leisure time on my hands - read a book, relax a bit. Silly girl!! There has been very little time to rest (or even go to the bathroom for that matter - lol!). I know the nurses are happy to help out with Maia as much as we need them to, but I have felt strongly about providing as much of her care as possible.

This morning, the individuals that I referred to in yesterday's post stopped by Maia's room for a hasty brief visit. They want Maia to have a repeat MRI in 4-5 weeks and will see her at that time. "Do [I] have any questions?" I said, "no" and they left. As soon as they walked out of the room, I broke down. The OT was in the room at that time and asked what was going on. I told her that I was so angry. That we would not be here if they had listened to us when we repeatedly said that something wasn't right. She suggested I discuss my feelings with them. And she's right, I need to. But this wasn't the time or the place to have the conversation. So when Maia goes to that next appointment, I will verbalize my anger and disappointment (yes, in a respectful manner). It's too late to change the outcome, but I need to know what they will do to prevent anything like this from happening in the future. And somehow... I will need to forgive.

Therapies today went pretty good. Maia's rental wheelchair arrived and we met with the owners of a company who will help create a wheelchair tailored to her needs. Not sure how much that is going to cost, but she does need to be safe and mobile. So while money is a concern, it can't be the only concern. As I mentioned yesterday, the days without therapy did take their toll and it will take a little time to gain back the ground she lost over the weekend.

Plan remains for discharge on Friday. It's daunting to say the least. I was looking at the various therapy goals which were set upon admission to rehab. We are so far from acheiving any of them. We're trying to get things in place for managing at home. I wonder how others do this. Any equipment we need to order will take approximately 4-5 weeks and we just have to make do during this time. Well, if we are improvising for that long - I would think that we would develop our own work arounds instead of spending money on equipment. 

On a somewhat humorous note, we are going to try a new bowel program for Maia. It involves something called a cone enema. After receiving instruction on said process this morning, I decided I was up for the challenge this evening - in spite of the nurse offering assistance. While it was successful, I will just say that this procedure will likely need a little fine turning. And note to self, do NOT (I repeat do NOT) wear a white shirt while performing this procedure. Gloves (and quite possibly a rain coat or something to protect the front of one's clothing) are highly recommended. Truly, it was one of those moments when all I could do was laugh. America's Funniest Videos might have had a winner there, if people weren't totally grossed out.

Just a couple of responses to your comments from yesterday:

Pat - You echoed the words of my heart. Thank you for understanding! And if you lived closer, I'd take you up on those offers of assistance. But your prayers mean even more!!

Jacqueline  - Thanks for understanding my anger. In some sense, I feel like my trust in health care providers has been horribly broken. The fact that these are colleagues/"peers" makes this an especially bitter pill to swallow.  Oh... BTW - I did not receive your email. Would you try again, using the link on the blog?

Jill - You're right. God HAS walked every step of this journey with us and He certainly is not going to leave now. I was reading Maia's bedtime Bible story tonight which was about Joseph. It talked about the difficult things he faced and asked "Was Joseph happy?  No, but God was with him and helped him." So it is with me. Am I happy to be in these circumstances? Nope, pretty sure NOT!! But God will be with us and He will help us.

And in keeping things in perspective, tonight I thought of my co-workers (former and current) Teresa and Crystal who have lost their sons in the past year. I'm sure that both would gladly trade places with me - just happy to have their children - even if their functional ability was different. There are others whose burdens are even greater than ours and I need to remember that when the path seems to difficult to navigate. God is walking that path with us and I need to focus on Him instead of my inability to see what tomorrow holds. He will bring beauty from ashes. Our sweet girl is here with us and I am thankful for her warrior spirit!


  1. You already know that although the thought of going home with everything so changed is daunting, you are more than equal to the task! Like you said, you are already doing much of Maia's care yourself. Home will be a more comfortable place to do it, and you will be on the schedule that works best for Maia and yourself not the hospital staff. No one will empty trash or turn on the lights as soon as you and Maia fall asleep (unless Mark does chores in the middle of the night!)

    Your ability to laugh at mishaps will come in handy until you figure things out. Go into this knowing that some things you try will just not turn out so well....laugh and next time you will be wiser. Sometimes around here we have survived by laughing when crying seems more appropriate. Maybe we look nuts but it works for us. You will find what works for you as a tension buster.

    Keep in mind that even on the days you don't see much improvement on the outside, Maia's little brain is healing. It is slow work. Any day you see her using what she has gained is a good day.

    Mother Theresa is credited with saying, "God does not give you more than you can handle, but I wish he didn't trust me so much." Praying for you often every single day.

  2. SHE IS STILL BEAUTIFUL EVEN BALD... Good grief... I can't believe how beautiful she is!! Continuing to pray for you guys!!

  3. Beautiful Maia! I love that picture!

    Melanie-you are working so hard to keep your perspective and that is the most anyone can do in crisis. I agree with Pat about what may be happening in Maia's brain...and I agree with the quote, I wish you were much less trustworthy as well.

    Yet sweet Maia needed YOU and MARK to be her parents. Parents who would love her and see her through horrible events like this and celebrate and love her no matter what.

    Praying for her. Praying for you. Sending you so much love...XOXO Jane

  4. Just a thought, but I have found several pieces of pricey equipment for our Meya on ebay for a fraction of the cost. Just put "special needs" in the search and then look under the section on medical mobility. As for poop - you might attempt doing a suppository and then putting Maia on the toilet with you holding her in place. I do this everyday with Meya and helps her so much with effective pooping (tmi, but it works). Our Meya is dx'd with quadriplegic cp, so her body functions in the newborn-4 month range and she is almost 6, so I have learned many techniques since we were blessed with our girl!

  5. Maia looks good, here. Indeed, she is just beautiful! You have such thoughtful, encouraging friends who comment here. I enjoy reading them and drinking in some of that encouragement for myself! I hope you get some rest tonight and that you will have a good day tomorrow. Tharen


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