Phone call from Dr. in the morning. I don’t panic this call was planned. He was able to be weaned slightly over the night down to high 40’s% oxygen!
Big step in the right direction.
Prayers are helping.
They changed some settings because his co2 was getting too low at his 4am blood gas. Continue reading “August 25 2016”
His oxygen needs have been fluctuating between 82 and 90% it seems very dependent on his positioning. Lots of tan fluids coming out during suctioning. Better out than in.
Infectious disease specialist came by and talked about the antibiotics he is on, and what they target.
Yeast is present in every persons lungs. But on a preemie it is a great concern due to the inability to fight infection adequately.
The yeast does not appear to actually be growing but is present at a elevated amount.
His white blood cell count is elevated.
His hematocrit is down to 24. Transfusion ordered.
New IV needs to go in. Hopefully smoother this time.
Our Little guy needs to
Fight all night
And fight all day,
So he can be ok
Little boy
Needs to grow and heal
And eat his meals
Our little dude
Needs to poop and pee
To be happy
Little Sweet pea
Needs to sleep and be
Get love from you and me
Fight all night
And fight all day
We hope and pray
So everything will be ok.
-Your desperate loving father
Our little guy continues to grow.
His weight is now 1450. Still really puffy.
He continues to tolerate his feeds. We have reached 27 CC. This is his max protocol. From here on the amount ge gets goes up with his weight and growing progress.
One thing he has to do is just keep healing and growing.
He continues to have an extremely rough time. They are trying many different things. His oxygen % is at 86%. pip is down to 27 from 28. Peep still at 8.
Culture from his ventilator tube came back with yeast. Started him on another antibiotic to combat this new issue. Continue reading “August 24 2016”
Had a good talk with the nurse. We talked about RT, and his sister who we are coming up on nearing a year since her death. As well as our history. She expressed her feelings and I feel like I misenterpreted the way some I our conversations went through the day.
Maybe we all woke up on the wrong side of the bed.
I feel like I must be more sensitive, at this difficult point for RT. I’m glad I can say good bye to this nurse on a more positive note today.
Last night while talking to the Dr. He mentioned my sons grade 4 IHV and his grade 2 on the other side.
I told him he only has a grade 4 from what I have seen.
Another phone call this morning.
Throughout the night his oxygen percent needs were around mid to High 60’s.
This morning his primary nurse was off going and the same one from yesterday came on shift.
The nurse tells me over the last few hours his needs went up to 100% oxygen.
They suctioned him “really good” not that they don’t always do a good job. Added nitric oxide, and upped his HZ on the oscillator to 12 from 10. Now his oxygen is back down to 57%. So it seems to be working.
Yesterday we were told Nitric oxide would likely not be effective. So I asked if they were both changed at the same time. And they were.
So we don’t know which one is helping. But they tried turning down the HZ and he started desatting so then they put it back up.
I accidentally said nitrous oxide while asking a question and the nurse promptly correct me, nitrous oxide is for cars.
Dr. Comes by. We have a cranial ultrasound sheduled. There seems to be confusion as to if RT has a new brain bleed, an old brain bleed that happened, or what they saw on the ultrasound last Thursday.
How can we have this type of confusion at this point is extremely concerning.
We discuss his increased needs, I ask what the plan moving forward is concerning his ventilator and which one is the correct tool. I tell her I’m not pushing for a particular vent but want what is best. She tells me she will talk to the respiratory tech.
We don’t know which one is best for the little guy.
A short while later the respiratory tech comes pushing in the NIV NAVA machine. Looks like we are switching back to SIMV mode on the conventional ventilator.
He is disconnected from the oscillator and bagged while connecting to the traditional ventilator.
The respiratory tech adjusts the depth of his ventilator tube .5 deeper.
He is back on the machine we were first using now.
I ask if we will get an X-ray to check the depth of his tube.
I am told it’s not needed. Likely just an X-ray tomorrow.
I thought any time a vent tubes depth is changed we have an X-ray.
The nurse and respiratory tech tell me we shouldent need it.
They ask if he likes his tummy. I tell them it’s one of his favorite ways to be positioned usually. They rotate him to his belly.
I ask if they do suction normally after repositioning.
They say no but do it anyways. She gets nothing out.
The Dr. comes in to see how everything has been going. They tell her they can’t wean him down. He just de-sats.
The Dr. tells them she will order an X-ray to insure tube placement is correct. They both agree this is a good idea…
Eventually X-ray shows up. They reposition him to his back for the X-ray. He does well, I look at the X-ray after tech takes it. To me it looks better, not whited out like it was. We will see what they say.
I change his diaper, and clean his eyes. His eyes are still stuck shut.
They rotate him back to his tummy. This time he gets suctioned without me asking, some fluid comes out.
He did well with cares.
This nurse seems to have little faith in RT.
We need someone that believes he can pull through. That loves him, that believes he can.
He begins to trend towards desatting more.
I ask if it would be worth trying suction. She tells me no. This is because of his PDA.
Instead his oxygen percent has been getting turned up.
See he is 97 spo2 now.
I ask again “so it’s not worth trying. To possibly have him do better on a lower percent of oxygen?”
“No suction doesn’t come without drawbacks”
Now his oxygen is turned up to 78%
Day is far from over.
Keep on breathing little man.
This morning the off going primary nurse was able to wean him down to 40% o2! His xray didn’t really show much progress although some change.
We have high hopes for the oscillator. Something has to work, we need a break through.
Throughout the day his needs slowly creep up then back down. Around lunch the day nurse is able to get him down to the high 30’s! This is what we need!
They take a sample during suction and send it off for analysis.
We are happy to be making progress.
Then back up into the 50s what changed?
It’s loud enough that they gave him ear muffs to help him sleep. Pictures of him using his PPE coming soon.
0600 wife wakes me up. It’s time to get ready to go up to the NICU.
After getting ready, we head up. We arrive at the NICU around 630.
Nurse tells us she was just getting ready to call us. RT had one big de-sat over the night, and many smaller ones. A new blood gas, does not look good. Almost all the settings are turned up on the ventilator to try and improve it. She shows us a new xray, maybe it looks slightly better.
This is the first time this nurse had him, she seems to have bonded with him over the night.
Oncoming nurse is one of the nurses that kindly volunteered to be more primary care for him.
Talking about weaning him on vent settings because xray looks slightly better. It is still horrible.
Dr. has concern that RT is over diuresed and becoming dehydrated, he thinks this is causing his increased oxygen needs and his heart rate to increase.
After not so much rest we are back at the NICU.
Before last night’s incident and. I had a 4 diaper change so his plumbing continues to work. This post jumps around a bit probably due to lack of sleep, and a turbulent train of thought.
He weighed in at 1287 grams.
Today is another day we are grateful to have nurses that are familiar with RT. Over the last few days we have had good continuity of care.
We were scared he might not make it through the night. This has been my fear every night. Getting that phone call that something has happened. It makes leaving his bedside to do the things we have to do as adults all more difficult. I can’t imagine the guilt I would feel not being a 6 minute walk from the hospital. Continue reading “1100-2300 August 20 2016”
Preemie Pop 