Woke up packed, grabbed car and went to NICU we were told the transfer team would leave Tacoma at 0900, arrive at our NICU around 0930, it would take a long time to pass all the information and do their own set of labs everything can take up to 3 hours.

So we arrived at the NICU at 0930 knowing it would be a long day. Well RT is already in the transport incubator, they are just waiting on us to show up to sign paperwork… Good to know, glad we were here for everything, and in formed the right time to show up…..we tell RT good morning. 

So we sign the paperwork and a few minutes later they wheel RT off away from us.

A few of the nurses and respiratory therapists say goodbye and tell us Goodluck. We take the nice posters our wonderful swedish nurses made for us and frozen breast milk. I  am sad that the surgery can’t be done here.  Oh well. We should be back as soon as RT recovers from surgery.

We get in the car and make our way to Tacoma general. Hospital looks fine,  we make our way inside and find the NICU, policies are slightly different. I’m not sure they seem quite as friendly. The building seems newer. We get shown our room after we scrub down.  RT has his very own room,  not sure I like this as much,  it is a long hallway with multiple rooms with one baby in each.  The nurse and respiratory therapist monitors his vitals on a competer in the hallway. I’m not sure they would have been able to respond as fast here as they did in the other nicu when he had his large events.  I hope we don’t have to find out.

On the plus side,  it’s quieter and more privicy, we have our own small couch, a recliner and sink. I hope these luxuris are not sacrificing RT’s safety.

They are working on admitting RT and getting him settled. He is upset and flailing his arms and kicking. His heart rate over 200 bpm. I tell him is ok, and reach in to contain his kicking feet. He is still quite angry.

“It’s OK buddy”
The nurses are talking to each other and passing information about him while taking a blood gas etc.

I say “You sure are an angry boy right  now.”

The respiratory therapist that is standing right next to me quietly tells me something along the lines of “try and be quiet”

I am in shock,  did I just get told not to talk to my son?

I take a few steps back.  Maybe I misunderstood what she said.  No I’m pretty sure that’s what she said.  I’m confused,  is it how this hospital is?  maybe they don’t like or aren’t used to parents talking to the baby? Or maybe she just thinks I was upsetting him more.

She has known my son less than 15 minutes and I’m told to be quiet around him?  He generally likes my voice and is soothed by me talking.

Oh well I guess she probably just thinks I was speaking too loud to be heard over the other commotion in the room.

Eventually things calm down,  one of the nurses gives him a hand hug.

I still am in shock.

He is at 37% oxygen which is good considering what he has been through.

I ask the nurse if they have any different policies on hand hugs here.  She looks at me as if I am speaking gibberish. What do you mean? 

I ask again, “hand hugs,  containment,  cupping my hand and holding him gently to help calm him down, is it allowed here?” I don’t want to get in trouble doing something they don’t like here when it is normal other places. 

She said “oh, I’ve never heard it called hand hugs.  I’ll use that.”  Then goes on to a big expending of when in should not do it,  like she would ask me to stop if he was asleep and I went in and started poking him,  waking him up and in general pissing him off. Or maybe after surgery they would not want me to”

Huh I never thought someone would have to explain that if I’m doing something that upsets my son I should stop. It makes me wonder about other parents,  the ones that don’t visit.  The ones that did drugs,  the ones that ask if they can leave with their baby after 8 hours in the NICU and then need an explenation why the baby isn’t ready to leave. 

One of the respiratory therapist mentions how much pressure he has on his vent settings.  We tell her yea he likes his pressure, she tries lowering it by one.  The volume he is breathing begins to dip. She then says yea he does like his pressure and turns it back up.

While talking about how things operate here,  the nurse mentions in two mouths something or the other wI’ll be happening….

We say, I think we are only here till RT recovers then we were told we would go back to Sweedish hospital…

The nurse is confused, I guess this is one of those things that was not passed.

“You want to go back to Sweedish? ”

Social worker helps us set up a place to sleep for the night, we ask how long of a duration we should put on the paperwork because we don’t know how long.  She says put a month.

Then xray shows up,  they don’t let us be in the room for xray in this hospital.  She tells us it’s a good time for lunch.

So time for lunch it is.  We eat at the cafeteria then head back up. His spo2 is on the way down from 94, slowly till it hits 83. Then he creeps his way back up.   The nurse tells us he was great till we got back.

We check into the “tree house” a hotel like accommodation ran across the street for people with family members in the hospital.

One of the things we have to sign says we promise to visit our child while staying here…. what is wrong with people? They have paperwork like this because someone has stayed here and not visited their child.

How can some people be like that?

The nurse tells us “You know how when kids are with the babysitter they are good,  but the parents show up. The kids begin misbehaving. ”

We tell her it’s usually the exact opposite, he is usually better with us around and most nurses have told us he does better with us around in the past.

She is probably just trying to be funny,  but I am stressed out about the surgery tomorrow and don’t think it’s funny especially after being told to be quiet.

Maybe the parents didn’t want to go back into a hospital where they get talked to like this.

Echo cardiogram comes, the guy is a larger fellow. He seems to be good at his job. When he leaves the nurse apologies for his smell.  I tell her its not her job to ensure other employees bathe properly.

I’ve noticed today I didn’t coach RT to get his spo2 back up.  I feel life they aren’t used to parents talking to their babies.

The alarm on spo2 isset to different values here  90-97. They don’t actually consider it a desat till 79 spo2 and don’t even seem to come into the room until it’s that low. Maybe it’s because they have not seen how fast he can drop.

I notice his respiratory rate on his ventilator creeping up and mention it to the nurse. She says don’t pay attention to the number on his ventilator,  just the one up by his heart rate and spo2. This is the exact opposite from what I was told at sweedish, the one on the ventilator is more accurate.

His respiration rate creeps up to 100 then 108, the alarm is set to 120. I ask again if it’s OK.  She says his spo2 looks fine so she isn’t concerned.

Several times through the day we tried talking to RT, anyone that was in the room and didn’t quite hear what we said asked what we were saying or for some reason thought we were talking ton them. Kind of awkward when you ask your baby what he is doing when his spo2 is going down, and a nurse or respiraroty therapist responds.

Later in the day they decided he needed a new PICC line because they don’t consider his current one central anymore. So they brought in a picc nurse, she warns us his vanes are difficult because his lungs are bad.  This causes his veins to be wiggly and be a hard stick. she tried one and it turned down towards hisarmpit before it went far enough. So she tried a second one with the first one still in. They encouraged us to get dinner so we did.  I am curious if they just didn’t want us there.

We get back and both PICC line attempts failed nurse says good news though.  They checked his red blood cell and platelet count. Crit is 32 so no transfusion needed. I notice his arm is still bloody  from the PICC line attempts, they are mid care and havent wiped it off. I mention the dried blood to the nurse, she doesn’t really seem to care. Maybe it’s not a big deal?  Or doesn’t want to make him angry by cleaning his arm?

So far we have noticed a few things the nurses aren’t sure about with RT or never got the info passed to them.

It definately seems like this hospital has something against Sweedish. They make small jabs when possible.

Funny because all the nurses at Sweedish only had nice things to say about the people down here.

We hang out and do cares.  I ask about the nystatin for his bits.  They don’t have an order for any. She says his butt looks fine.  So I tell her it’s because his urine culture came back with yeast so his butt was not the issue.

I feel like everything I say they have a reason for not doing it, or tell me I’m wrong somehow.   I know hospitals operate differently. But it is weird. Quite the transition, but we will adapt. I know they are more than capable here, and just want what is best for him. They just don’t know us, or him yet.

Surgery tomorrow around noon. NPO at 0400.

I pray tuesdays surgery goes smoothly. Today’s happenings don’t make me any less anxious.

0103 We love you RT. Please have a good night.  See you in a couple hours.