Go up to the PICU early.

RT is still on 22%!

He is 17 weeks old!

Nurse today is one we meet yesterday, but have not had.

The pool of nurses is smaller so eventually we will start having the same nurse multiple times.

Sounds like he had an ok night.

Re-taped at midnight because the nurse did not feel it was safe. He did not get weighed because the nurse did not feel safe doing it.

Seems odd that things we have been doing every day for the last 119 days they don’t think are safe. Some people just really are not confidant or comfortable with intubated babies. Makes me wonder if people at the NICU know how inexperienced some PICU nurses and respiratory therapists are with this small of babies.

There are areas where each is out of their comfort zone. A picu nurse here is not used to intubated babies, and a nicu nurse would likely not want a baby on a high flow canula over 8 liters per minute, one nicu nurse did express that she was not as confidant dealing with larger babies such as RT, and found it slightly intimidating.

He pooped last night!

The Dr. comes in to chat.  He wants to try intubated CPAP to see how he does for 2 hours.  Depending on how he does do it several more times over the next couple days then a potential discussion of when to extubate.

Th he Pulmonologist stops by, he likes the idea.
The nurse does a blood gas. It takes several sticks. Then mom and I do cares.

Reposition. Binky time,  get him comfy. Swapped to intubated CPAP.

The settings are closer to what he would recieve on high flow (what he would get once extubated.)

PEEP of 5 instead of 8.

Lowest peep he has ever had!

One of his NICU respiratory therapist and a primary nurse comes and stop by! Good to see them.

He does good!  Respiration rate up a bit but not too excessive unless he gets upset. He settles down to a rate of around 40 several times.

Oxygen percent remains on 22%.

RT does just fine for the full 2 hours, near the end the nurse gets another blood gas, it’s about the same as before!  The doctor is impressed.

He wants to do it again tomorrow for possibly 4 hours then talk about the next step!

We order lunch to the room.

Do cares.  Reposition, the nurse asks how we want to position him, I say belly.  No one has done it here yet. She says they want to disconnect his breathing tube to flip quick then recinnect it.  I tell her we have never done it that way but we can try it.

We do,  it seems not much faster, more risky moving quicker, and an unnecessary disconnection of his breathing tube.  He tolerated it fine though.I tell the nurse that was more stressful and I feel the other way works better.

Have lunch for the first time in the same room as RT.

Hang out.  Do cares. We rotate him to his back, nurse asks to do it the other way,  I guide the process, smooth,  slow calm.  Works good,  I feel like she agrees that the other way works better, components us on our abilitys to do the job.

Retape his ET tube. 2nd time today. Getting slightly excessive with the frequency.  Not sure what they are doing to need to do it so frequently.

RT’s alarm gets turned back to to 100.

Dinner. Have celebratory desert 17 weeks!

Back to PICU,  shift change.

Same nurse as last night.

Mom and I do most of cares.

Nurse doesn’t like the way the et tube is taped already. She wants to retape it,  doesn’t feel like it’s safe.

The respiratory therapist doesn’t have time till later so they add some more tape to it….. a lot more tape to it.

At some point it just becomes tape on tape hiding other tape.

Probably if anything just making it more dangerous, can not see the tape that is actually stuck to his face or if it’s starting to peel.

Pretty rediculous, obvious how infrequent they deal with this type of situation.

One of our NICU night respiratory therapist comes and stops by.  She heard we were having a good day. It’s good to see her, I point out the tape job.  She is not happy, like us. She makes some phone calls and gets another respiratory therapists to come assist.  She will retape him properly!

We are so grateful that there are people that care about RT and come check on him and ensure he gets better care.

Kind of scary that it is needed.

Tonights respiratory therapist got to participate and learn how to do a better job taping.  I think there needs to be more training for PICU nurses and respiratory therapists on intubated patients.

Hopefully this new tape job lasts longer!

Hopefully fingers crossed this tape thing will become a thing of the past in the not too distant future.

The respiratory therapist has someone go and run down a new EDI catheter, and a spare from the NICU…they don’t have them in the PICU.

New clean EDI inserted.

So grateful for the nurses and respiratory therapists that come visit! RT has quite the fan club! I’m hoping we will be able to bring RT back and meet some of these people some day!

New tape job looks much better and RT is much happier with it.

Kind of pink where the old tape job was,  looks irritated, mom has me take a picture to document it and track if it worsens. Good idea mom!

Long day, but pretty stable!  22% all day other than when they bump him up to 100% for retaping…. only a few smaller events.

I feel like they don’t realize they can turn him down to 21%, or no one wants to try their luck. He was brought to the PICU on 22% and has been there ever since, kind of funny.

Then if he needs some extra support there is no middle ground he gets bumped to 100%… interesting difference between the PICU and the NICU.

Keep up the hard work RT! Your amazing!