Friday, May 06, 2011

Zuperfliegen: Held Hostage

From Zuperfliegen

Let's see. This post should be dated April 15 - Happy 1 week old, Zupe!

We were supposed to be discharged from the hospital on Day 5 - April 13. My obstetrician came by and signed me out and then Zupe's pediatrician came in and did the same. The midwife staff, like Kevin and me, was concerned that there was something not right about Zupe. We discussed the possibility of getting a second opinion.

About that time the ped came back in to recheck Zupe. He wasn't so happy "about his color". He did a second physical exam and ordered some tests: a CBC, pulse oxymetry (measuring oxygen saturation of his blood), and blood gas analysis (oxygen, carbon dioxide, pH...). I watched the saturation values on the screen. His average was in the mid to low 90's. I wouldn't have been happy with those values if he'd been my patient - but I only measure saturation routinely during surgery when my patient is inhaling 100% O2 (well, except for the bit that is isoflurane). The nurse wasn't overly concerned. The ped. wasn't either. Nor was he bothered about the lower than normal O2 and higher than normal CO2 on the blood gas - but he did call in for a Respiratory Consult. (That is Resp- ear- a - tory with the accent on EAR.)

Those doctors were concerned and requested that Zupe spend the night in the Special Care Nursery getting an overnight saturation study that would be analyzed in the morning. And, so, we spend an extra night.

Then, Zupe spends an extra 15 nights.

He had a chest xray, a cardiac ultrasound, a brain ultrasound and numerous blood gas studies. Everything was normal with the exception of the blood gas studies that were done when he was NOT receiving supplemental oxygen.

My observation which I shared with the respEARatory doctors on their first visit to the Special Care Nursery was that his oxygen was good (98% or more) when he was awake and feeding, less when quiet and awake and damn scary (mid 80's) when deeply asleep. Still, it took almost 2 weeks and both the ped and them saying that everything looked OK, until he had a "Sleep Study".

SLEEP STUDY: Photo see below "Onion Head" April 27 post.
Lots of wires and probes and sticky pads. It is a wonder anyone can sleep. During the study a continuous stream of data are collected for later analysis: EEG, ECG, oxygen saturation, chest excursions... Initially this is done while the patient receives oxygen (at the level they've "been on" - for Zupe that was 100 ml.) Then, the oxygen is turned off and this data collection continues. Then, well, then, if you're Zupe, you scare the nursing team so badly they crank up the oxygen a mere 7 minutes later to 250 ml!

So, by the next morning (Thurs 21 of April) the gods have spoken and the word is "Zupe needs to go home on continuous oxygen therapy at 250 mls." Also, that "It will take 24 hours to complete the necessary paperwork and then up to 3 days to get the oxygen in place in your home so he can be released." And, "Hey, tomorrow is Good Friday and this year Anzac Day falls on the Easter weekend so no one will be able to even START the paperwork until NEXT WEEK Wednesday."

An earlier enquiry of the sleep study nurses suggested that once oxygen is requested it takes 3 days to get delivery.

Thinking here: request filed on Wednesday. Plus 3 days: Thursday, Friday, Saturday.

"Will oxygen be delivered on a weekend?"


And, that following weekend is ANOTHER holiday weekend - Labour Day - so that would set us up for delivery on the NEXT TUESDAY!!!!!

Because you are living in a non sequential universe, you know that we got delivery in 1 day and brought Zupe home on Friday.


Once home, we removed our "bands of solidarity".

(Photo above...taken when we first learned we'd be in for a long haul in the SCN.)


Flicker said...

Just checking in to see what's been going on. How is life at home with Zupe? So worrisome about him needing oxygen, but glad you have it. Thinking about you!


NNV said...

Zupe is doing well. His target weight gain (per the dietitian in the Respiratory ward) is 150 to 200 grams per week. He is averaging more like 3-400. So, we've got eating down. The oxygen is a small annoyance (to me- not to him - it is all he knows) as I move with him around the house. It is more of an issue when I want to take him OUT of the house. We have small portable bottles - who would think a gas could be so heavy? Fortunately, our stroller has a basket underneath that will hold it. The only strain comes from carrying his car seat and the oxygen when going out to the car.

Been missing your blog. You must be very busy lately. Has the heat got you down?

Flicker said...

Oh that sounds good about the eating. Just a pain about the O2. When our Baby A was born he had jaundice and we had to keep him in a light box with blinders over his eyes for a few days. Awful! But you cope with whatever you have to cope with.

No, it's not hot here yet, oddly. Just haven't felt like blogging. But I'm trying to get back into it.