Results = Direction

As I sit to write this I am alone in JD’s room in the NICU staring into the beautiful, cloudless Chicago sky. I take comfort in the fact good things happen on bright sunny days. The little man is currently getting an MRI of his cervical spine (the neck portion of the spine) to be evaluated by neurosurgery. Seems like quite the jump from my last post huh? Well, it is not too far off. Let me start with the sleep study.

The Sleep Study

Sunday night was JD’s sleep study where they put electrodes and monitors all over him to observe him while he .  . . well sleeps. You would think they would have some fancy, confusing medical term for the test but nope just a Sleep Study. Of course, he had a great night with no episodes because he is just like all other kids. They are perfect when we actually need them to act up. When we heard he had no episodes we were nervous it would lead to inconclusive results. Turns out he did not need any episodes as they got the results they needed.

Good news: it’s not reflux so the Nissen is off the table. YAHOO!

Interesting news (I don’t like using the term bad news): he has what they are classifying as Severe Obstructed Sleep Apnea.

Good news: we now have a few answers and a focused direction to help him

Sounds easy right? Let’s go in look around find out what/if the obstruction is, fix it, and head home. Not so fast . . . JD likes things complicated and this is where it gets a bit challenging.

One of things I have failed to mention in the blog is how anything and everything that JD does needs to be cleared by neurosurgery. Why? Well, it turns out the collar is not as simple as helping his bones mineralize straight. Dr. A (the neurosurgeon) wants to make sure the cervical spine is not being compromised with the tilt in his neck. The more we push back on the collar the more important it has become. All that said, neurosurgery trumps everyone/everything else.

The way I explained to my dad who asked “who is running the show over there” I believe they take the most severe problem and that service is at the top of the pyramid. For example, if a child has a severe heart problem then everything would need to be run by cardiology before any decisions were made. Same thing with JD only instead of cardiology at the top of his pyramid neurosurgery is the king.

I promise all of this has a point. Back to the results . . .

With Severe Obstructed Sleep Apnea they now need to bring in ENT to do a full evaluation on his airway. There is a long list of potential causes for the possible obstruction so let’s keep it top line. ENT would like to do two different tests that do have fancy, confusing medical names which I do not know (remember I have only been a “doctor” for 2½ months). 

Test 1: ENT will put a small scope in through his nose to check out the anatomy of the upper air way. This does not require JD to be sedated making this test simple in comparison to Test 2.

Test 2: ENT will put a larger scope down his throat through his mouth with a camera to evaluate the lower portion of his airway. Obviously, this will be more uncomfortable and invasive so he will need to be under anesthesia to ensure he remains motionless.  His head and neck will need to be in such a position it will cause him to be out of alignment as well as the possibility of needed a breathing tube during the test. This is where neurosurgery comes in. Neurosurgery wants JD to be midline at all times to ensure the safety of his cervical spine, however, the test will pull his neck out of alignment. This is where we get back to our pyramid with neurosurgery on top. ENT will now need to be cleared by neurosurgery to do the test.

At the same time as the ENT test the doctors would like to do the G-tube surgery so he does not need to be under anesthesia more than once. Plus, ophthalmology has be itching to do a test while sedated but we have pushed it off until there was another mandatory procedure that needed anesthesia.

This is where it gets tricky. In order for neurosurgery to clear JD for the ENT test and the G-tube surgery they need to take a better look at his neck. In order to take a better look at his neck they need to get an MRI. In order to get an MRI they need JD to stay completely motionless. In order for JD to stay completely motionless he needs to be sedated. Which means he will have to go under anesthesia twice: once for the MRI and once for the other 3 procedures. Ugh!

Next steps:

1)    MRI under sedation to check the neck

2)    Neurosurgery to study the MRI results and make a decision about what JD can handle in regards to movement with his neck*

3)    If Neurosurgery clears JD the 3 services will need to be coordinated for the same date for the procedures

a.    Pediatric Surgery: G-tube

b.    ENT: Test 2

c.     Ophthalmology: Eye test

4)    Schedule procedures all for the same date and time

5)    Analyze results from ENT - make adjustments

6)    Start feeds through G-tube

7)    Another possible sleep study

8)    Cleared for departure

*No idea what happens if we stop at Step 2 and he is not cleared by neurosurgery. I have not asked that question as we will have to cross that bridge if need be.

Surprisingly, after the doctors laid out the new plan Nate and I felt relieved. Yes, there are some scary possible outcomes if he has severe breathing problems. And yes, this means we will be at the hospital for a few more weeks. But now we have a direction and we know what we are working towards. The pinpoint sized light at the end of the hospital tunnel has finally started to peek through.

Late Day Updates

First step complete! Check.

Before the MRI JD seemed restless as if he knew something was coming. They had to stop his feeds at midnight last night and they did not take him down to the MRI until 11:30am this morning. My little man takes after his mom; he was quite hungry. As soon as the transport isolette came into the room he started crying which is very rare for him. He is a smart kid because he knew something was up.

It was a rushed process as the nurse prepped him for transport. To pat myself on the back, I have done a great job of keeping it together through many of his obstacles yet today was not the day to make my boy upset. Our nurse was great but as I said it was rushed and in the haste James’ little finger got pitched in the window of the isolette. It was not hard or tight but it was enough to have him shout out in pain and cry even harder. My heart dropped and I was no longer the calm and collected mother because the tears started. Whew, it is going to be a long road if I cannot even get through an MRI. In hindsight I have to say I am pleased he cried out in pain. We have read that many of the WHS kids rarely cry making it difficult to tell when they are uncomfortable or in pain. His pain receptors seem to be working which is great news for us.

I was able to escort him down to the MRI and hold him while we were waiting for the room. He took his pacifier like a champ and was calm, but not relaxed, during our wait. When they took him into the MRI room I was able to go back to his room in the NICU and wait. Oh my goodness, this is a fabulous perk to having a private room at the new hospital. The alone time helped me collect my thoughts and restart the afternoon.

Seriously, what are you guys doing to me?

After the MRI, JD was a totally different little dude. He was so chill. The anesthesia team were just going to put a breathing mask on him during the MRI but if he had trouble breathing then he would need to be intubated with a breathing tube. As the transport isolette came into the room I zoomed in on his mouth . . .NOTHING, NO MASK or TUBE!!!!!! James you are a rockstar.

The anesthesiologist said JD was great with just a few dips in his numbers but never lost his color or breathes. He was having no trouble coming out of anesthesia and was wide awake. With the MRIs he had on day 2 and 3 of life he had a really hard time staying warm (the MRI rooms are freezing) so I was nervous about his temp. The nurse took his temp as soon as he came back in and he was at 98.2 degrees hanging out super comfy. After taking his vitals (which all looked great) they started his feed again which he took down like a champ. No problems.

But I have not even gotten to the best part. His Saturation numbers were AMAZING. Over the past few days he has been hanging out around 90 – 94 (these numbers are out of 100 so you want to be at 100%) but after his MRI he was hanging out at 98 . . . 99 . . . 100. 

I'm batting better than the Cubs right now with these statistics

Seriously kid what are you doing? Oh my goodness the afternoon became even sunnier. I was stunned. No idea what happened down there but he seemed to like the anesthesia they gave him. Maybe in a previous life he grew up in the 60s and liked the Cheech and Chong way of life. I don’t know but I will take it. The remainder of the afternoon was spent awake and very comfortable for both JD and mom.

Tough guy after the MRI

Devilishly handsome and a tough little Bulldog with no collar and no tube

Yesterday and today both started out on a low but by staying positive, trusting our parent instincts, loving JD unconditionally and praying led to both days ending on highs (literally for JD). From that fateful day on December 15^th through an early delivery and an extended hospital stay we have never once doubted James Douglas. He will tell us what he needs and he will fight each and every day with us standing proud right by his side.

JD has extraordinary life ahead of him with lots of sunshine and a few mountains to climb; but he is equipped with the best climbing gear ready to take on any boulders that come his way.