For starters, Clinic day is an ingenious way for us to see all of our specialists in one long day. It’s amazing and wonderful. It cuts out on time driving to Nashville, gas money, and me having to keep up with a million appointments. We have a SB Clinic coordinator, Rose, who is a literal Angel straight from the Lord who sets up our appointments and coordinates with all the doctors and answer my questions and promptly respond to e-mails and I love her with my whole entire heart. But seriously, I don’t know how she does it.
Nehem care team consists of (but is not limited to):
A neurosurgeon, urologist, orthopedic doctor, nutritionist, physical therapist, occupational therapist, and as Nehem grows and changes, we could add a number of other specialists to that team.
So, yeah that’s a lot of people and a lot of people equals a lot of appointments and a lot of appointments equals a lot of trips to Nashville and a lot of trips to Nashville equals a lot of time and money and I think you get the point...
Today, our appointments didn’t start until 9:45. We were able to kinda sleep in to get to Vandy at a reasonable time. Nehem was appreciative of the extra sleep, as were Shane and I.
First stop was the urologist office. We had what’s called a urodynamics study. I don’t 100% understand every single thing that they’re looking at but here’s the short of it: Because some of Nehem nerves never formed, the nerves to his bowel and bladder don’t work like a typical person’s. So in this Urodynamics study, they slowly filled Nehem’s bladder with a dye and monitored his bladder pressure (what his bladder will hold) throughout the test. They’re also monitoring the kidneys during this test. Our urine moves from our kidneys down into our bladder to empty, but with SB, sometimes the bladder backs up into the kidneys causing reflux. There’s a lot to this test and he will have to have this test several times as he grows. Like I said, I know there’s more to it than this but that’s a brief overview.
Back in the day, before people knew much about SB, people died of kidney failure at a young age because they weren’t as proactive about all of these things, so results of this test could change Nehem’s care (starting to cath, etc.) it’s also very important to keep his bladder and kidneys healthy so he can love a long and happy life.
They put a hospital gown on Nehem and I thought it was adorbs.
Nehem needed to be pretty still for this test, so he got a bottle, stared at a toy and had to be held down for parts of it. Luckily he’s pretty calm and doesn’t cause too much of a fuss.
The results of the test showed that Nehem’s bladder pressure is good, and he does have some reflux into his kidneys but right now that doesn’t seem to be causing any issues. Yay!
Just waiting for the doctor to come in and give us test results...
After urology, Shane and I grabbed some lunch and Nehem napped in the stroller...
After lunch, we headed to SB Clinic. When they first called us back, they weighed Nehem. He’s ahem, officially 15lbs. They also took some blood. He cried but only for a second. Strong kid.
First, Neurosurgery came in. There wasn’t much of a need for them today, but they are a critical part of our care team so we love to see them. They asked some questions, checked out Nehem’s back, felt his head, reminded us of shunt malfunction signs and said “see ya in 3 months!”
Next, a Physical Therapist and Occupational Therapist came in. They asked a million questions, did lots of small evaluations and seemed super impressed with his progress. So impressed that they almost didn’t believe all that he’s accomplishing. He tends to “lean” his head to one side over the other so they showed up some positions to remind him to stay mid line.
Nehem was not amused, clearly.
Next, we saw a nutritionist. Right now, Nehem is gaining weight, tolerating feeds very consistently, and has even begun purées with no issues. She was super sweet but didn’t need to spend much time with us.
Last, we saw our Orthopedic Doctor. She’s sweet and personable and we expressed some concern about tightness in Nehem’s right ankle.
We all tend to keep our ankles pointed downward in a relaxed position, but Nehem doesn’t have the muscle or movement to pull his ankle back up. The goal is for his ankles to be at a 90 degree ankle so he can eventually tolerate bearing weight. She thought some small splints would be helpful for now to keep the ankle positioned correctly. We went down to another office for them to make casts of Nehem’s feet in order to make the braces specifically for Nehem.
At this point, Nehem was tired and done with people touching him. So although this was the least painful and annoying of everything we did, Nehem cried the entire time the nice lady casted him. Poor kid. It’s so hard when he doesn’t understand what’s going on or why all these strangers are in his face.
This was our last stop of the day and Nehem was hardly back in the stroller before he was asleep.
We grabbed an early dinner with Shane’s parents and got on the road back to Madison.
As soon as we got home, Nehem got a bath, a bottle and fell right to sleep.
So there you have it. A day in the life of an SB Clinic day. Clinic days are long and I know as Nehem gets older there will be a lot of planning ahead to pack things to entertain him, but I am ever so thankful to see everyone in one day, no matter how exhausted I am at the end of the day!
Too sweet not to share!
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