Our Family in a Snapshot: 10,000 Page Views and Proof

On Wednesday morning I opened the blog to find we had surpassed the 10,000 page view mark. YAY! Basically, the blog is on the exact same trajectory as Facebook was 6 months in (give or take a few 100,000 or so). Marky Z, watch out the Gawels are coming for ya.

All joking aside I wanted to thank each of you who read the blog daily, weekly, monthly, only once, or whenever. 10,000 page views means JD’s team is more than just the doctors, nurses, and surgeons. It extends well past those direct health care individuals into a group of people who have loved JD well before he was born. The support and prayers we have received from the moment we sent out our announcement email has fueled the little fighter within JD. Even if those 10,000 page views are the same 10 people reading the blog over and over that is enough for him. 10,000 page views means you are reading the blog, passing it along, and hopefully getting inspired by JD as he faces his challenges with his little chin held high. 10,000 page views means everyday JD gets just a little stronger knowing he has an army of people at his back. In the simplest terms . . . Thank You 10,000 times over.

Proof is in the Collar

Waiting was the name of the game this past week. I was spoiled by how quickly they were able to schedule his MRI so I just assumed the rest of the hospital had dropped everything to focus solely on JD. Wrong. Turns out neurosurgery had a few other brains to operate on so they did not “read” the MRI until Thursday morning.

Once again Dr. A walked in to say “his neck looks great, I am pleased with the progress.” Okay hold up doc you gotta start giving us more than that. However, before I had the chance to throw down he said “let me pull it up on the screen for you.” And here is what he showed me . . .

On the right: MRI from 4/4 (2 days old) -- On the Left: MRI from 6/26 (2 1/2 months old)

WOW, well okay then. Collar it is. We had no idea his neck was extreme as it was explained to us in different terms. In reality, I would have been devastated had I seen the first picture when he was 3 days old. My hormones were enjoying a rollercoaster ride and I would have never thought we could see such improvement from the soft collar. But now, after 3 months it is fantastic to see such improvement. It makes sense why Dr. A walks in with a smug smile on his face to say “I am pleased with the results.”

Sorry bulldog, the collar stay on for now

After we ooohed and ahhhed over the great improvement it was time to discuss the elephant in the room . . . will neurosurgery clear JD for his ENT test and the G-tube? The answer is . . . ummm, probably not. What? Can I get a yes or no please? As Dr. A talked around actually giving an answer it became clear he was not going to clear JD for the ENT Test 2. However, he did mention if the airway becomes a problem then we will need to reevaluate because the airway always comes first. I laughed and said “what, something actually trumps neurosurgery?” He smiled and said “yes and I don’t like it very much.”

When I told Nurse Amy about what I said she told me I had made her day because I gave him a hard time. Anyone who knows neurosurgeons knows they have pretty big egos and take themselves very seriously. However, I would much rather have a neurosurgeon who has an ego and is the best at his job rather than one who thinks he is kinda, sorta okay. So far Dr. A has proved to be the right mix of ego and humor. Gotta keep these surgeons on their toes and I am not afraid to throw my intelligent wit right at them (similar to the surgeons if I think I am funny then I am probably am funny).

Alas, neurosurgery is still king and he says no to ENT Test 2. It turns out ENT Test 1 will not give us the answers we are looking for even though he would be cleared for that test. ENT is out of the picture for now.

Where does that leave JD and Severe Obstructed Sleep Apnea?

On Monday, Dr. C, the pediatric surgeon, will schedule his surgery for sometime during the week. It will be a very basic procedure which makes scheduling a bit easier. Dr. C will not be traveling for the July 4^th so our guess is the surgery will be on Tuesday or Thursday. We still need to have a more in depth conversation about the actual surgery/recovery but from what we can tell the recovery should be fairly easy . . . relative to other NICU surgeries.

Once the OG tube is out and he is up to his full feeds through his G-Tube (it usually takes a few days to ensure he can tolerate everything) they will put him on a nasal cannula (see Medical Jargon for details) and repeat the sleep study. The cannula will give him just a little boost in his breathing. Our hope is to take him home with the cannula to use while he sleeps until his airway is stronger to breathe on his own. Like I said, that is our hope. JD breathes on his own 23½ hours of the day with a few moments here and there so the nasal cannula should make those random minutes throughout the day more comfortable for him. We will not cross any other bridges until absolutely necessary.

Our emotions have been all over the place the past few days but after seeing the strong development in JD’s MRI and knowing he will get the OG tube out next week we are confident he will soon become more comfortable. Plus, one of my best friend’s had her first little baby girl yesterday so I got to snuggle with JD at Lurie Children’s then cross the brand new bridge to Prentice for some snuggles with baby Emma. It was a good hot weekend.

P.S. Check out my use of actual links within the blog. It is obvious I have not only mastered the art of being a doctor but website developer is not far behind.

Some random shots from this week which I love: