Tuesday, May 11, 2010

The Wait is Over!

"He does not crush the weak, or quench the smallest hope; He will end all conflict with his final victory" (Matthew 12:20, TLB)

It is rainy, very rainy and they are calling for snow. I want summer to come. When summer comes though I will be wishing for winter.

Another day of emotional turmoil. Another day for God to show me his faithfulness.

After therapy and feeding Makenzie I still had yet to hear from Makenzie's doctor or anyone at the hospital for that matter. So I loaded Makenzie up in the car to make a visit to the hospital to try and get some answers.

The problem was mainly that I could not get ahold of Makenzie's GI doctor. With as well as she is doing I normally would have made an appointment and left it at that. However, when our new friends came to visit, I told them Makenzie's pediatrician had been contacted and knew what was going on. I told them he was fine with all of it and would continue to follow up with me. However, they still wanted to know why I hadn't put the GJ tube back in because the GI doctor had made the recommendation to do so.

I informed them that I was trying to get into contact with this doctor but he had not yet returned my calls. Still, our new friends continued to push the issue. They asked why I had changed the tubes out myself and then told me that it appeared I was hurting Makenzie by doing so. I really didn''t feel like anything I had to say mattered because I wasn't the doctor.

So today after 10 days and 5 requested for a call back I finally was able to talk to the GI doctor. Part of me feels bad for being so angry but the other part of me knows I was frantic for a good reason.

I explained our visit with our lovely friends and he apologized. He chuckled when I told him about the video and how they thought I was hurting Makenzie. He asked about Makenzie and the feeding. Out of all of the calls I made to the nurses the only thing he had been told was that Makenzie's button had broke and she needed it replaced..... really? He told me that it sounded like Makenzie was doing great and to continue feeding her the way I was and we would talk more in depth with both him and the dietition at our appointment in a couple of weeks.

He put it all in writing for all who may be interested to see. A huge weight was lifted in that moment.

I also requested a complete copy of Makenzie's medical records. Trying to find out how many pages it would be and how much it would cost froze up their computer at about 600 pages.... crap! So by my estimation this is going to cost me over $200! I am not happy! That is highway robbery! The only way I can get those reports is through them and that is what they charge! oh well.... I would like to have them so I guess that is just the way it will be.

Tomorrow we have the first of 4 appointments with a seating company. Both Makenzie's PT and her seating guy will be there to consult. We will be able to put Makenzie in a seating simulator that will help fit her into the perfect chair. (well as perfect as we can get it) I am leaning more towards an Aspen Seat that would be molded specifically to Makenzie but we will see what the detailed eval will say.

Once again thank you so much for praying! I am tired but feeling very blessed! Keep praying for Miracles!

Believe... Prayer Works!


ShaunaQ said...

I'm glad everything is turning out well amongst the experts, Pam.

I'm just wondering, have any of those "new friends" ever changed, put in, accidentally pulled out, know anything about g/g-j tubes at all? I accidentally pulled Christian's button out the other day, and, yes, it hurts him when I put it back in. But I was trained to do that and what's the alternative? Let it close and do another surgery? Oh, that's better.

Oops, I probably shouldn't have outed myself seeing as your blog is tapped. Oh well!

Glad Makenzie still being a super star!!!

Reagan Leigh said...

Another way to get your medical records (free) is to have them sent to another doctor. We fill out the request for medical records and have them sent to our pediatrician and then get a copy from her (for free). Just an idea. So glad everything finally worked out with the GI doc. Mother always knows best!

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