Journal

Thursday, September 12, 2013 9:47 AM EST

Not what we wanted to hear!

On Tuesday Nolan had his first post op appointment with Dr. Ain. We did not hear what we wanted to hear, yes the x-rays looked ok, nothing pulled out or moved, but Dr. Ain did explain a few things to us. First being that this was a redo surgery, Nolan’s bones are mush, so we will have to be extra careful while healing. Second we did not understand the severity of not keeping Nolan in his brace locked straight 24/7.( There was some major miscommunication on his part) We had been letting Nolan sit in a chair with his brace on and ride in the car and sit up for eating, he has taken showers and even slept once or twice without the brace on (it’s hot and uncomfortable) BUT Dr. Ain made it clear Nolan is not to be out of the brace at all, or sitting up at all!!! In all the 11 years we have been dealing with doctors I have never been reamed like I was on Tuesday or told how disappointed he was in us as parents (even though it was really his own negligent instructions). Now because we had not kept the brace on 24/7 or locked straight Nolan will now have to wear the brace another 3 months instead of another 6 weeks. I felt sick that we have caused him to miss even more school and to be stuck in this situation until December 10th! The third surgery we were planning looks like it may not occur until 2014! So we had a little pity party on Tuesday and Wednesday, cried, complained, had a glass of wine and moped around. Today is a new day and I am trying to make plans for things to keep Nolan entertained until December, I think he is more upset about missing Halloween than anything. The Home and Hospital teacher started last Friday, her name is Ms. Kristie, she will come Monday and Thursday for three hours at a time. Nolan and she seemed to have hit it off well. Nolan and I have watched Pitch Perfect more times than I can count and I am sure we will see it a few more times in the coming weeks.

Whenever I feel down about our situation I just have to read up on some of our MPS friends to know how blessed we are, so many of the other MPS kid have so much going on, from infections, heart valve replacements, surgeries, pneumonia, ICU visits and list goes on and on. We are blessed that Nolan is relatively healthy and happy and that he adjust well to his ever changing situation. Nolan rarely ever complains about his plight and when he does it is understandable. I on the other hand have a harder time accepting why he must suffer so much in this life, why any of our sweet babies must suffer, our courageous strong fighters, who just roll with whatever comes their way. I would not be so gracious enduring the many things that befall our MPS warriors. I am always so proud of Nolan when he just lets the doctors do what they need to do without as much as an ouch or a whimper coming from him, sometimes a silent tear falls from his eyes and it breaks my heart. While Nolan watches life from the sidelines never asking why he will never play football, or lacrosse, why he won’t run track or a marathon, why he can’t ride a bike, play soccer or just run up the stairs, I feel slighted sometimes. I want all of those things for him and more. (I think I am still in pity party mode) Nolan has such a sweet good hearted spirit, people are drawn to him like a moth to the flame. I feel so bad that he did not get to start middle school with all his friends, to experience the first day and all that comes with this coming of age moment. Just one more thing that MPS has stolen from him.

That’s all for now.

Love and Blessings
The Ramsey’s

Hospital Information:

Patient Room: 10th floor North room 44

Johns Hopkins

Maryland
303-859-0179

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