Thank you all for your sweet comments, thoughts and prayers from the last post. I do have to say that in addition to the miracle I witness everyday in Struthers, I see God working through these posts and through you all. I feel it as I write from the heart at the same time trying to objectively explain the sometimes unexplainable. I feel it as I watch in astonishment the number of visits to the page tick up. I feel it as I read, digest and treasure each and every comment. And I know it as the very people I am thinking of as I write send me a private message after the post :). God IS good all the time, and he brings people in and out of our lives in beautiful and poetic timing.
So here’s our update since the last posting:
- Struthers has transitioned beautifully to his new weekday care routines, with a nurse on Monday, Tuesday and Friday, Christiana on Wednesday and mommy usually working from home at least part of Thursdays.
- It has been a long while since I’ve used the pulse oximeter daily on Struthers…for the same reasons I mentioned in the last post. It’s too easy to get caught up in what numbers are or should be. And he’s already tethered by an oxygen tube from one end, why would I attach wires to the other end and inhibit the very motor skills we’ve been trying to encourage? I’ve known when I needed to pull it out and check, and usually by the time I’m doing that, his oxygen saturation levels are indeed quite low (otherwise I wouldn’t have had indication to use it, right?). He’s also just a happy, contented child and a little sneaky–he will hold his levels up, but work really hard to do so…until he just can’t anymore. So…with the introduction of home nursing, we are back at checking the oxygen saturation levels about 4 times a day. And what we’ve found over the last few weeks has been shocking, heartbreaking, guilt-inducing, and discouraging. It’s not awful and there’s an easy solution of just turning up a dial, but Struthers is just living pretty much constantly hypoxic (which likely explains the growth thing) on the baseline of 1/8-liter O2 we’ve been giving him for months. Every morning when we’d get him up, he was very low…like high 70s, low 80s low. And mind you, his baseline O2 at night is at least twice that of awake/daytime. Sigh. Then we’d crank it up and he would be back above 90%, but could only maintain that if we had his oxygen cranked up to between 1/2-liter and a full liter. After a week of switching tubing, concentrators/filters and tanks and these numbers being the norm, (and Struthers not really being or acting sick), I called to just update the pulmonologist. And she said, “I’ll meet you in my south Denver office.” As suspected, his lungs sound fairly clear, he’s not wheezing consistently, not aspirating. But he’s still just not oxgenating well. And he does GREAT when we give him that extra little help. We’ve checked and ruled out the most obvious causes–pulmonary hypertension, PDA, aspiration, reflux, etc. So it’s time for more extensive testing.
Fortunately, http://www.childrenscolorado.org/departments/breathing-institute is one of the few places in the country that can do full infant Pulmonary Function Testing. We will do that and a CT, both of which have to be done under sedation. The pulmonologist expects it to show the the Bronchopulmonary Dysplasia and Chronic Lung Disease are still severe. And that answer will confirm that we just have to keep doing what we are doing to support with oxygen, steroids and inhaler cocktails until he is bigger and stronger. The other thing she expects to learn is exactly HOW reactive his airway is, both to closing off and to opening up with specific bronchodilators. I’ve mentioned before how much I love our specialists. She looked me in the eye, saying, “I’ve treated hundreds of preemies who come in just like Struthers (she’s seen him since the week after we discharged from the NICU). Most of them are off oxygen by now and respond very well to half the regimen he’s on. But I’ve had a few who charted just like him, got sick all the time, stopped growing, went the opposite direction in their oxygen needs…but it’s just for a time. It’s just a waiting and growing game. I tell you this to encourage you…that the treatment is really the same, we just have to wait a lot longer and help him grow. He will be running around just like those few patients before you know it. And we will rule out a few other things and get all the answers we can in the meantime.” Love her.
- THEN, just HOURS after seeing her, Struthers came down with a nasty cold. We EXPECT numbers to be down when he has a cold and you can hear him breathing. Anyway, it was a rough couple days, but we seem to be on the back end of that, ever grateful for a standing “Activate the Mobile ICU” gameplan, which includes starting the prednisone that remains filled and in the cabinet for such a time as this and initiating “Q4” (every 4 hours) nebulizer treatments.
- Now, for the GI/growth update: the 30-calorie formula is doing the trick! Struthers weighed 18lbs, 15oz at the visit last Thursday, and then 19lbs, 2oz early this week! So we are not yet on continuous feeds, but have orders to continue the 30-calorie formula and continue ‘bolus’ feeding it through the tube when he does not take in a minimum by bottle. That being said, he then got sick and I wouldn’t be surprised if we are back in the 18’s again. Oh well, our two steps forward, one step back is a fun little dance now!
Thank you for your continued prayers AND for allowing me to share this adventure with you. It sometimes feels like a lonely road. But after each post, I feel as if I’m suddenly joined in that road with all of you! Once again, you are all a beautiful analogy of my walk with God…I know you’ve been there all along pulling for us, you’ve just been waiting for me to reach out and say I need you. THANK YOU for being His reminders of that here!