November 24th 2016 the rest of the day

Well.

Before the eye exam the doctor was saying RT was doing so well respiratory wise that he may not technically be considered critical! 

Eye exam results were unfortunate. But we are grateful that it was caught,  and there is something that can help. 

RT dealt with today almost as if nothing happened. 

We have been warned in the past that sometimes after eye exams babies will refuse to open their eyes for a day or even a few. 

Within an hour of his eye exam and injection he was opening his eyes again. 
His right one was puffy and didn’t want to open but he still managed to squint.

He even gave us a few smiles today.

I feel like he knows he is loved and that everything done to him is to make him better. He gets mad in the moment as he should but forgives us quickly.

Absolutely amazing. 

Stable day, a nurse that has not had RT turned up oxygen once because his nasal prongs were coming out of his nose, not because he was having an event. He just needs some extra oxygen. 

There is so very much to be grateful for, even in a situation like ours.

We will see what tomorrow holds. 

Just keep swimming.

Morning of November 24th 2016

Wake up early another ROP exam this morning.

When we walk into the PICU there are 3 people around the bed…

One of them is the PICU Dr. Always a bad sign.

RT is on 25% oxygen still 2LPM.

Turns out the nurse wanted the dr to check out his hernia because it’s larger. It has been over the last several days. Atleast they are keeping an eye on it.

The Dr. was able to reduce it. Nothing different.

Just a nurse that has never had RT.

The drops were timed for 0800. Because they like the drops in an hour before the eye appointment.

It’s 0815, the nurse for some reason seems unsure when to start the eye drops.

Eye drops in around 830.

Eye Dr. shows up at 0900 as promised.

Nurse tells him she didnt get the eye drops in on time. He says it should be fine.

Dr. Asks if we have any concerns, I say yea of course but not because I have seen any indications his eyes are not working, just fear.

I swaddle up RT tightly, nurse holds his head. I hold his body steady.

As Dr. is examining his right eye the nurse starts asking what he is looking for.

In my opinion as a Dr. is doing an extremely thorough exam on a babies eyes you should not distract them. He describes what he is looking for.

I give him his binky dipped in sweeties. While I don’t like it we will do two dips today.

RT is very upset about the exam, bares down and turns bright red, desats to 86 spot then goes back up. Heart rate to 210. Poor guy.

Next Dr. examines the left eye.

He has to ask the nurse to straighten his head, she has let him turn away from him.

The exam is over.

Dr says the right eye has plus disease again.

No ROP though, so can’t do surgery. Only option is an injection of Avastin.

Left eye looks good though.

This means the blood vessels are calling for extra oxygen.

I ask if this can be caused by higher oxygen. He says yes.

I mention that the Dr. Is planning to wean his liters per minute airflow and raise the oxygen percent. Eventually he will be on low flow and 100% oxygen because they say at that point oxygen percent does not matter.

I ask if we should evoid high oxygen then and he says yes.

Makes me mad that there were people here in the PICU using 100% oxygen for small desats.

There were times he was left on 100% for a whole ET tube Retape job that took an hour.

It was unnecessary and his spo2 was sitting at 100.

I blame the people that did that.

Two weeks ago in the NICU no one was turning him up that high. His eyes showed no signs of Plus or ROP.

A week down here with more time spent on 100% and we have a issue.

I talk to the PICU Dr. he believes an hour at a time at 100% oxygen wouldent cause this and just thinks it’s because RT was on oxygen for so long of his life. Says if that was an issue then it would effect both eyes not just one…

Then Dr. says desatting is also not good for him.

I point out again his spo2 was sitting at 100 the whole time so it was obviously unnecessary.

He doesn’t have much of a response.

I point out I’m not mad at him just discouraged that his eyes were doing ok 2 weeks ago. Now with people bumping him up to 100% even when I asked them not to do It unnecessarily and now we have an issue. I am searching for reasons.

No sure if he gets what I’m saying.

Probably just thinks I’m an angry parent.

They don’t normally have to worry about this issue in the PICU because they don’t deal with premature babies like they do in the NICU.

The eye doctor brings in the consent forms and information about the injection.

We have no other options, I’ve already read all this information, possible issues. 1 being a possible issue with brain development, more issues with brains, lungs, kidneys, although unknown if it is because of the injection or just because babies that require the injection often have issues with the above.

Oh and it’s not approved fr use by the FDA to treat ROP, but has been shown to be effective. If left untreated he will potentially have retina detachment.

Don’t have any way to go by accept that the injection benefits outweigh the risks.

1030 eye injection complete. his eye will be bloodshot for a while.

He obviously didn’t enjoy it but better than going blind.

I clarify with eye doctor, he says the hour at 100% oxygen and spo2 should not cause this, it’s the other factors.

Eye doctor is going to India next week for a conference and do a 1 hour talk on ROP. glad we have an eye doctor that knows what he is doing!

His partner will be around and check on RT while he is gone. We will see him in 3 weeks.

Thankful we caught it before it got worse.

We love you RT.

November 20, 2017

RT is still on a flow of 5LPM, 25ish percent oxygen,  I say ish because the knob isn’t all that accurate, HFNC (high flow nasal cannula) isn’t verry high tech. 

RT had a good night, same nurse as yesterday.

It’s a relief to see he had a good night! 

PICU Dr. Stops by,  says she is going to let him have a day without changes.  She tried him on a flow of 4LPM for a bit but he was not a fan. 

Sounds good to us,  we don’t want to go too quick and go backwards.

Cares go good, just pee,  gave him a suppository last night and got a poop.

He has been very stable,  more stable than intubated,  pretty much only desating when the nasal prongs pop out of his nose, obviously he still needs them. 

He seems happier today,  we get some good smiles out of him. Mom is able to catch a few with the camera! 

He still likes to grab for the the nasal canula. 

Lunch. 

Cares,  put him in his awesome Seahawks jersey.  There is a TV in our room so we put on the game. First time I’ve watched TV in about 120 days. 

I hold RT through the whole game. Very good hold,  he gets angry with the nasal canula occassionaly but other than that awesome.

I ended up mosty staring at RT and not watching the TV first game watched with him though! Pretty cool him wearing a signed jersey and Watching the game.  Seahawks won!

Put him back.

Cares,  RT manages to yank out his ND feed tube… that’s not good.  

Now they have to put one back down. And do another xray to confirm position.  

We can’t feed him into his stomach because of the risk of reflux and aspiration…

RT gets pissed off with them trying to get it into the correct position, I try and help keep him calm. 

X-ray comes. 

They take an image.  Nope ND is kinked and still in the stomach.

They try again. Nope. 2nd xray

More angry. 

Try again. Nope 3rd xray.

More angry.

Almost,  they will put him on his right side and let it work its way through,  hopefully. ..

No feeds for now. 

IV line is still good,  fluids started back up.

Now ofcourse RT does not want to be on his right side. Angry boy.

Binky time. 

Mom and I take turns holding his binky in, and eating dinner. 

He calms down a bit. 

Shift change. 

Night nurse is the same one that he had the night before last. 

She brings us a binky that is sewed onto a beany baby black bear.

It kind of can hold the binky infront of his mouth,  cool idea that they have! 

He eventally calms down. 

Sleepy time. 

Time for us to try and get some rest for tomorrow. 

Another good day!

It doesn’t matter if it’s the weekend or a weekday to us we are there every day all day. RT doesn’t get weekends from having to do so much work, so we don’t either. 

RT one tough dude! Keep it up buddy!

November 19th 2016

Woke up early to be there for his 4th intubated CPAP trial.

Got to the PICU,   cpap trial starred about 10 minutes ago.

He’s doing good!

Sounds like he had a good night!

IV line installed.  Getting fluids, he has not been getting fed since about 0300. Due to the risk of regurgitation and aspiration when the ET tube is pulled. The Dr. has seen it cause babies to pass away…. obviously better to let him be hungrier for several hours!
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