Where to start? Well since the end of July, we managed to get back of somewhat of a “routine”, each week. Riley had blood pressure checkups weekly still, PT appointments, and was working on tapering of his ACTH. By the 26th, he had his last dose of ACTH that morning and a feeding PT appointment just a few hours later. He had been making lots of progress with having little tastes of food, and handling his own saliva pretty well. So the natural next step was for him to try having little bites of food (emphasis on the word little). He had maybe a spoonful of some hummus, then some yogurt (as he would only take a little bit off the spoon each time), during his session .Took him a little bit to grasp the concept of closing his mouth around the spoon, pulling the food off, and then swallowing. But with a little assistance, he started doing pretty well with it quickly, which no signs of any distress or struggles. I made a call on just having him try it once that day during therapy, to make sure he tolerated it all well and didn’t have any issues, then see how he was the next morning to try again. Well the next morning, he was pretty gargly, coughy, and breathing harder. That sent us into see his Ped, and that sent him back to the hospital, where we have been since.
His chest x-ray showed some cloudiness in his top right lung, and without much more invasive testing, it’s hard to know whether he silently aspirated some of his food the day prior, or if his stomach has been refluxing his formula (from his NG tube) back up into his lungs. Do to the timing of everything, the thought is the silent food aspiration, but he does have an ND tube in now so his stomach can’t even have the chance or refluxing anything up, while he recovers. A ND tube is the same concept as the NG, except rather than stopping in the stomach; it goes through and into the intestines. That way he still gets his nutrients and medicines, but his stomach can’t even have the chance of hurting his lungs.
So it’s now Sunday, and he’s been here since Wednesday afternoonwith a mild case of pneumonia. We took him off food for about a day and a half, and kept him just on fluids and antibiotics. We got a new formula flowing on Friday, and he seems to be doing fine with it. He is feeling better enough that he thought a poop last night was hilarious when Chris and his night nurse were changing him. He has been on oxygen hook up that can have the percentage of oxygen, and the pressure of it controlled. Depending on how his stats have been doing, that has gone up and down several times. Now he’s pretty stable with it at 40% O2, and a pressure of 10 (out of 15 I think). Did another x-ray just a little while ago, and that area of his lung is starting to clear up, which is great .You can definitely tell all this crud in him is loosening, because since I’ve gotten here this morning, it’s kind of just all pouring out his mouth and nose. Something I’m sure you wanted to know ;-)
Next step is to now start slowly lowering the percentage of his oxygen, just not too quickly. Since he has decreased muscle tone, it may take longer for him to recover and can’t just jump down on this stuff. Otherwise we run a high risk of needing to turn it back up, and possibly even higher than where he was at. So as the percentage comes down slowly in the next few days, if his stats stay good, we can start to turn down the O2 pressure as well. Once he gets to the point of his lungs being clear enough with good stats, he’ll go off the O2, and we’ll switch the ND tube back to an NG (which is way more manageable for us), and make sure there are no issues there, then finally go home. Looking at, at least a few more days, if not later into the week. Will all depend on how his weak body can handle adjusting back to taking care of its self, without all the assistance he has now. Needless to say, we’re not thrilled to be in the hospital so long, but right now it’s the best thing for him. Poor Sadie has been stuck at home wondering where the hell Riley is. When I went home to sleepThursday night, she ran around the house looking for him and Chris.
From here, once he’s back to his base line and stable at home, we will continue with his testing, that was actually supposed to start this last Friday. I pushed out his MRI and spinal tap to the 11th, and depending on how much longer he is here, as he needs a week of being stable at home before going under anesthesia, may or may not have to reschedule that again. He was also supposed to have his 24hr EEG this Tuesday, to make sure that now he’s off the ACTH, the IS has stayed gone. Once again, need him better than where he is at now to make that worthwhile. So that will probably get pushed out a few weeks too. He still has his repeat swallow study for the 8th, so we can reassess and see if the NG tube can come out and he can have bottles with modification, or if the study shows it’s the same or worse, start talking about a GI peg.
Imagining the next month or two when we’ve returned back to a “normal routine”, is a bit hard to fathom at the moment, but know it’s there and definitely can’t wait. We’re crossing our fingers that we are able to go home at some point this week, so we can still go on a little get away to Chambers for the boys to golf, and I shop with the boy and the girls. If we still can go, thankfully it’s only about 40 miles away and could leave easy if needed. Also looking forward to Thanksgiving in San Francisco with lots of family and friends. It’s coming up, but seems so far away. Once we get through these next few weeks and get Riley back on track, hoping to get on our tickets. Can’t wait to watch the Hawks beat the 49ers, and take Chris and Riley to Buena Vista and Fisherman’s Warf. Can’t believe tomorrow is September already. This year has flown by at a snail’s pace. So many things our monkey has endured, and fingers crossed we will have a better direction soon for him.
