Remember yesterday when I was talking about how much support we had there with us? Well I forgot to mention the support we had that couldn’t be there! Smokey Bottom BBQ had an event the same day, but they wore their Team Ryder shirts, and even mentioned us on the menu :-)
And remember yesterday how I said that Ryder’s kidney condition had allowed us to meet some amazing people that we otherwise would have never crossed paths with? Allow me to introduce you to one of those people I was referring to:
Meet Amy! She is Ryder’s Neo-Natal Case Manager….huh?! That’s the same thing I thought the first day she called me! I still remember it like it was yesterday. It was 2 days after I brought Ryder home from the hospital, he was already 2.5 weeks old. I was in major “I just gave birth and now I’m in charge of this little life and I really don’t even know what I’m supposed to be doing” mode…and Amy came to my rescue! She called and explained to me that because Ryder was pre-mature and had other health conditions she was assigned by our insurance company to be his case manager, so basically she would just be calling to check on us, answer any questions we might have, you know, just be there to support us however she could. Wow, really? How did I get so lucky? We talked probably every other day while I was on maternity leave, and at least weekly ever since. I have asked her questions about any and everything that has to do with a baby. She has given me guidance on feeding him (from breastfeeding to switching to formula and now on to solids), bathing him, working with him developmentally, getting him into a routine, establishing a bedtime, what to do when he’s sick, how to get him to poop…when I say everything I mean everything! She has even gone as far as to help me sort out issues with our medical bills, and calling the nurse to get bloodwork results when I was in tears out of frustration for not being able to get any answers. This is a woman that I feel so lucky to have on my side. I don’t know when the case management ends, but I think I will cry!
Today since I was going to be in the area for Ryder’s kidney appt, we decided to meet for lunch. It was so nice to meet face to face and we had a great time! Her & Ryder bonded right away, I figured they would, she knows every detail about him…plus she’s a baby expert :-)
During lunch we actually ran into Ryder’s Kidney Doctor! As always, when I talk to any of his doctors about something serious, my mind goes blank so the only words I heard from that conversation were “we’re going to have to scope Ryder”. So, I freaked. I thought he was saying they were going to be doing a procedure today…and I was alone…and scared! Amy to the rescue! She went with me to the appointment, bless her heart.
Figured I’d throw in a picture to transition…and break it up a little bit!
So what ended up happening was, we went to the appointment, they did the usual sonogram of his kidneys and bladder, all of which are continuing to grow and develop. They are having some concerns about his urine flow though, so they’ve scheduled a Cystoscopy for December 1st. Basically, Ryder will have to be put to sleep and they will take a little camera and go up through his “thing” (which he found in the bathtub the other day, haha, Alan didn’t want me to post about it…something about invading his privacy) and they are going to look to see if either A) his tubes are narrowing or B) there is some scar tissue from his first surgery where they carterized his valves. Also while they are in there the Doctor is going to do another evaluation of his kidney function. SO, we’ve got big things coming up. I’m so sad for Ryder that he has to go through all of this, but he’s a tough little guy and I know he’ll make it through just fine (with the help of lots of prayers of course).
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