Dash had a good day.

He gained weight since his last weigh-in on Sunday morning, so they transitioned him to oxygen. In case he needed to go back to Nava, they kept the nasal catheter in which required his cheeks to remain covered with tape. He seemed ok with the change, though was expending a bit more energy breathing without any pressure.

He had a good nap, then a good occupational therapy where he played with a balloon.

Then later in the day an RT came in and took out the Nava machine, and then removed the catheter. The new cannula is much lighter so it requires much less tape, so we can see his cheeks for the first time! We’ve seen them occasionally for minutes at a time when they replaced the tape, but now they’re uncovered most of the time.

He kept smiling afterwards, probably because there isn’t a tube going up his nose and down his esophagus.

Then he tasted some sweet potatoes and had a bath. He had a good time with me while Katie read some books to him.

Anything could change still, but he seems to be doing well. I’m cautiously optimistic he will get released next week. And if he does, we will be ready.

Dash had a good day.

He slept well through the night, but woke up incredibly cranky. He needed a diaper change and Katie made animal noises to calm him down. Eventually he did settle down.

During rounds they were considering jumping him from Nava to an oxygen cannula, but decided to give it one more day. They did wean the Nava level down to 1.0, just to see how he’d tolerate it. He did great, no issue. Apparently 1.5 is no additional assistance, and going down further means he may need less oxygen when they take him off it tomorrow.

Katie and I did an infant CPR class, which is one of the NICU items on our checklist. We both took an adult CPR class in high school, and it brought back memories of our strange health class teacher.

Dash had a good day.

He slept well last night and was happy this morning. At rounds they decided to wean his Nava levels further to 1.3 and a pressure of 5. They could just move him to oxygen at this point, but if they wean him down a bit further it will indicate that he needs less liters of oxygen.

He actually took it like a champ. He was breathing a little heavier, but still smiling and acting happy. He ate some sweet potatoes at his therapy session and he wasn’t crabby after his bath. He seems happier at 5 than he did at 6.

Our primary nurse thinks we’ll get discharged next week. I’m still reserving a bit of doubt in my head in case something comes up, but things are looking good. It feels like a hard right from where we were a month ago.

Dash had a pretty ok day.

At rounds they talked about weaning both the Nava level from 1.7 to 1.5 and the pressure from 7 to 6. Both of these numbers are the point where he can be transitioned off of Nava to oxygen if he does well. They said they’d only want to wean him today if he showed growth today. Usually we get his measurements on Sunday nights, so they wheeled the scale in a few min later, and he did gain a couple ounces and almost a centimeter. So they adjusted the vent settings a little later.

He didn’t seem to notice any change and he had a good session in his chair. We opened the curtains to the hallway and he looked at the nurses walking by. He also had a good play session.

After his bath he started having a bad time. He had a coughing fit that he recovered from ok, but started crying and wasn’t easily consoled. He recovered for a bit when we read him picture book stories, and then resumed crying when we put him to bed. Maybe he was just tired or uncomfortable or who knows. It could be that he was exerting too much energy with his breathing, but I don’t think we’ll know until he has a few days under his belt. His numbers still looked good, and his breathing rate didn’t go too high like it would a few months ago.

We started ordering the stuff we’ll need when we do go home, like diapers and water wipes and stuff. Since he has a g-tube, his insurance covers the he cost of his formula, which we just learned today.

Dash had a good day.

The doctor and APN still talk about discharge as if it’s a few weeks away. I think the next week will tell us a lot.

They changed his feeds so that he’s now 90 min on 90 minutes off. He still coughs a bit when he’s full, but otherwise was ok. He had some good playful moments during the day.

Katie and I went out for dinner for the first time in months. When we eat out, we usually get takeout and bring it back in the room. We drove a few miles out to an outdoor burger place called Small Cheval, which is a spin-off of a fancy burger place in Chicago. It was a place my therapist recommended a little while back. Katie already knew what it was. Afterwards we got ice cream. It was great!

Dash had a good day. His parents did too.

During rounds the doctor said that Dash is close to going home. He said it could be as little as two weeks if he can be weaned off of the Nava and onto oxygen. We thought he’d have to hit a Nava level of 0.5, but actually the target is 1.5, and he started the day at 1.9. They weaned him from 1.9 to 1.7 in the morning. He’ll still need his pressure to go from 7 to 6, which he’s had trouble with in the past, but he’s much bigger now. They tried to see how he could handle 25% oxygen (he’s been at 30% for 2 months) and he desatted while we was sleeping. So he still needs the oxygen for awhile.

In all likelihood, two weeks is very optimistic. I’m speculating it’ll be mid-August. It’s a very good sign the doctors are talking about discharge as it hasn’t come up in any concrete ways in the past. We’re prepping to go through the parent’s checklist—taking a CPR class, bringing in his car seat, etc—and are trying to get things in order.

He’s still got a bit of a rash, but it’s looking better than it did. He was a little fussy at bathtime, and took forever to fall alseep, but otherwise had a happy, playful day.

Dash had a pretty good day.

When Katie got to him in the morning she noticed that he was breathing harder in his sleep, but when rounds happened, the doctor was considering weaning him further. So they must be seeing his progress in therapies as a better indicator of how he’s doing. The doctor said something about how Dash is heading for an exit door, which is good to hear, though we’re probably guarding ourselves from getting our hopes up.

There has been an influx of new patients after a few weeks of it feeling a little empty, which means we’re getting drop-ins from some of Dash’s past nurses. Some haven’t seen him since before he was extubated, some it’s only been a month or too. He must be getting talked about around the place.

His rash hasn’t gotten any better, so they want us to pause on the carrots for a bit. He can still have apple purée.

He actually went to sleep within a half hour of going to bed, so we got to our bedroom at the RMH at like 8 instead of 9.

Dash had an ok day.

They weaned his pressure settings for the first time since he’s been on the Nava from 8 to 7. He did better than he did when he was on CPAP and they tried the same wean. He was a little fussier than earlier in the week, and he was breathing a bit harder. But perhaps he just needs to get used to it. He still was smiling and playing, which is a good sign.

The changed his feeds yesterday to 1:45 on, 1:15 off, getting 95ml per feeding. He took the change like a champ.

He’s been developing a mystery rash. It’s all over his torso neck and head. At first they thought it was a heat rash caused by his clothes rubbing on his skin, but it’s in places where clothes don’t touch. They’re keeping an eye on it, and he still as a prescription for cortisone.

Dash had a good day.

The doctor today said that he seems to be a much different kid than during his last rotation a few months ago. His breathing rate is like a typical healthy kid now. He still works harder when he’s breathing which is a symptom of his BPD, but he thinks he may be ready for more aggressive weans soon.

He was playful during most of the day and before his bath we gave him some carrot purée, which he loved. He wasn’t being fed formula through his food pump at the time and we noticed some carrot backing up through the tube, so he is swallowing without much issue.

Outside, I saw a lady pushing a stroller with 12 seats, most of which were full with 1 year olds. At first I thought she had a birth with the most multiples ever until I realized they were different races. I’m guessing it was a daycare situation.

I went back to the gym this morning and walked and ran on the treadmill. I’m still easing into it so it was mostly walking with some running mixed in. It felt good!

Dash had a good day.

They weaned his NAVA one notch from 2.1 to 2.0, which he took without any issue.

During speech therapy he got to try puréed carrots, which he liked way more than apples. He even held his own spoon.

Katie and I got up early and went to a gym. We hadn’t gone since before he was born. We didn’t do anything too strenuous as we want to ease back in, but I felt pretty good afterwards.