Wake up early to get to the nicu before his eye appointment

Weight on the board is 2065 a gain of 15 grams.

Nurse today is a primary. She tells us the night was better than last night but still eventing,  had two larger events already today.

0800 cares just pee. Good timing,  the eye doctor arrives after a long 45 minutes of cares with pampering and a goodbreak from his CPAP mask.  Continue reading “October 6th 2016” →

Earlier wake up this morning to have breakfast with grandma. I show her some of the pictures and video I have taken.

After breakfast we check grandma out of the hotel and put her luggage in our room,  then up to the NICU.

One of RT’s primary nurses is on today.

Weight is 2050 on the board,  still losing weight.  Getting rid of all that swelling he put on after eye surgery.

The nurse tells us he had a rough night,  starating at about 0500. They turned his CPAP pressure up to 9 now. Continue reading “October 5th 2016” →

Weight on the board is 2100 he has been losing some of the swelling weight he put on over the last couple days after surgery.

Not as close to 5lb now.  But that’s a good thing.  Lasics are working.

He is in a cribette again!

He is on 36% oxygen,  nurse today is one that has had him quite a few times.  He had some more brady desat events through the night,  some involving shallow breathing.

A few this morning too. Still trying to figure out what is causing it.

Wife has pointed out that the some of the doctors are saying that it is just him still recovering from surgery but.   Continue reading “October 4th 2016” →

RT has one of his primary nurses today!  He is on 36% oxygen.
Less brady events. Acting more like himself.

After 1100 cares he is able to be weaned to 32%.

Cranial ultrasound.  We do lunch during it, he has been handling cranial ultrasounds well.

After lunch mom goes to do chores and me and grandma go to NICU.

Ultrasound tech is still there…. slightly concerning normally it takes about 15-25 minutes…. it has been almost 45 minutes.  I ask if there is any issue.  She says she is a newer ultrasound tech and that he she wants to make sure she has all the right images before leaving so she won’t have to come back and bug him.

Fair enough.   Continue reading “October 3rd” →

Nurse today is one we had a while ago. She has a nurse in training following her today.

The eye doctor came by right before we got in.  They are able to grab him before he leaves.

RT is on 50% oxygen.  Disappointing.  But better than it could be.  Continue reading “October 2nd 2016” →

Rough day but he is hanging in there. Breathing tube started him making more thick secretions in his lungs again before extubation. So he’s trying to cough them out now because they can’t suction it out till it’s in his mouth.Can feel his chest rattle and he has wet sounding coughs.  Continue reading “October 1 1/2 2016” →

0612 phone call from hospital.

Calling to tell me that they will be extubating shortly because he is Vagaling ( heart rate dip) every time they move him or position the tube. As he became more aware through the night his responses became more extreme. He had a large event and desat that his spo2 went as low as 12… It should be 96…

I get dressed and run up to the hospital.  Continue reading “October 1st 2016” →

We stayed the night in the parent sleep room on the 2nd floor to be just a little bit closer.  It is a good feeling to stay close afer a rough day.  Not better sleep, because it’s a slightly worse and smaller bed than at the hotel but it is worth it to be closer.  Made possible through donations!  Hopefully someday I will be able to donate to do something like this.

In the morning I am jarred awake by a fire alarm.  I quickly throw on my clothes, grab my camera backpack and phone charger.

I wonder what they do in the event of a fire in the NICU 4 floors above me…. Continue reading “September 30th 2016” →

During surgery RT didn’t require too much additional oxygen. After surgery his oxygen needs went up during transfer to transport isolate and transfer to his bed in the NICU. By the time he was back and at the NICU after surgery he was requiring 100% oxygen.

Scary because he was close to room air just a few hours ago. Hopefully it’s just because he is disturbed, uncomfortable and whatnot.  Continue reading “Post surgery September 29 2016” →

About 1000 laser pulses in each eye. Surgery wentabout as well as it could. Intubated for surgery. We will see how well he does and hopefully get him extubated again in the next couple days. 
Hopefully this halts the progress of the ROP. Dr. Saw change for the worse even from looking this morning so it’s a good Thing we were able to get In and do surgery today!