It is f-f-f-fr-freezing here. Not only is it single digits outside, our new hospital room has older metal frame windows and (think of radiating heat) it is actually radiating/blasting cold air. I slept in the chair with a scarf on, boots on, and wrapped in a blanket. Oh wait – I don’t think I slept. Amanda’s roommate had cardiac issues around 10pm last night that kept the lights on and a steady stream of doctors and nurses until almost one in the morning. We tried to sleep from one until 5:30am when the phlebotomist showed up for Amanda’s daily blood contribution. At that time, Amanda and I simply got up for the day. Thank goodness for the coffee vending machine down the hall.

Several calls have been made to the medical supply place today. As of yesterday we were told that as soon as they get authorization from the insurance company they have a c-pap machine ready to deliver to the hospital. I am getting a ‘lil nervous. It is going on 1pm and they better get that thing on it’s way here.

Amanda’s PCO2 continues to bounce around. Yesterday morning it was way high at 69. Today is was 44.4 …. normal. Go figure. We just need to go home and rest and recuperate.

You will hear me cheering if that darn bi-pap shows up this afternoon.

just Laurel

So no bi-pap machine from the medical supply place. More waiting. Another night.

It should be appproved and delivered tomorrow.

sigh

Then it’s ANOTHER night to wear/test it and then go home Thursday?

I’m not going to hold my breath. It’s no fon getting your hopes up.

just Lauerl

Hello all.

Well I got to feel semi-normal today and went to work. 730am to 130pm. I was pretty weary but it still felt good to be doing something else besides sitting in a hospital room. Ted spent (an uneventful) last night with Amanda and then left at noon to run into Rouge/Severstal Steel. Thank you Susan for coming by the hospital and hanging with Amanda for a couple hours. Both Ted and I got back to the hospital around 2pm.

They finally moved Amanda out of her ICU room to a regular room – so check with me before coming to visit as we have a new address. The news is a bit more encouraging today – there is a wonderful respiratory therapist named Laura who has been tracking down another medical supply place that we can use and is busy filling out and faxing the info they need to get her the correct bi-pap machine. We are pushing to get it by the end of today so that she can sleep with it tonight, get tested in the morning and go home tomorrow.

So that’s what we are hoping and waiting for.

Of course I will keep you updated.

just Laurel

Ahhhhhhhhh.
Nooooooo.
Unbelievable.
So the medical supply place says – “Oh she already has a bi-pap” and so we had to argue with them that yes, she does have a bi-pap but it’s the wrong kind – the docs want her to have a different kind. So 45 minutes before the medical supply place closes they finally get it that it’s a certain kind we need – and they say that we need this test and that documentation and of course once we re-write the prescription correctly for them they will order it, but of course it will take a few days. Are you kidding me???? So we stay in the hospital for a few more days until all this stuff gets worked out and they get the right equipment? No wonder medical costs are so high. Now the hospital gave the medical supply place the prescription on Friday – to give them heads up and a head start. Oh my. I want to puke. Do you know how much quicker Amanda would recover if she could be home, sleep in her own bed and all instead of hanging in the hospital a few more days???? Not to mention what’s left of Ted and me.

So totally frustrating.

just Laurel

We have a plan.

Doctor wants Amanda on a different kind of bi-pap machine then what we have at home. Medical Supply place has already been contacted to deliver the new bi-pap to her hospital room this afternoon. Amanda must sleep with the new bi-pap tonight and then have her blood tested in the morning. If her CO2 is at an acceptable level then the machine passes the test and we can go home. Tomorrow.

We shall rest up for a few days and then go to the Children’s Hospital Neurosurgery Clinic on an outpatient basis.

Feels so good to consider going home tomorrow – but I shall keep rein on my excitement until it’s for real.

just Laurel

Got a phone call from the Neurosurgery Clinic at Children’s Hospital. New plan: We were advised to get discharged from Wyandotte Hospital and then (after a day or two of rest at home) go to the neurosurgery clinic on an outpatient basis. They can see her, evaluate things, and have any necessary tests and scans done – and then if they need to do something (surgery) we will be admitted through them.

So now – we have to see under what criteria the pulmonary doctor here will discharge Amanda. Last time she had pneumonia, she went home on oxygen but gradually weaned off of it. We already have the oxygen machine at home – so if they want her on O2 at home, we are already set up for that. The CO2 is a concern – but I would be more than happy to bring her here even twice a day for blood draws – so much better than being a patient.

So – home is the current destination. Yeah! Hope it can be arranged in a day or two. I’ll keep you posted.

just Laurel

I’m almost embarrassed to have to write the same thing today: Good morning Wyandotte. Sleep? Amanda is doing well. Don’t know her CO2 level yet today. Ham and cheese omelet for breakfast. No word on a bed from Children’s.

Ted stopped by this morning for a few minutes – just checking on his girls I guess. He is off to Mansfield, Ohio for the day. This is the second night in a row that I spent here – and now here for the day. I did that so Ted can do tonight and I can sleep at home and then go to work tomorrow. I had to cancel my work days the past 2 weeks – and I like my job! – and I told Ted I really wanted to work tomorrow. He will stay tonight and be here tomorrow until I get off work.

And, yes, Amanda is well and alert and doing good but, yes we need to be here for her. Several times she has had breathing treatments and the respiratory therapists forget to put her oxygen canula back on her. Amanda can’t always reach it nor position it on her face by herself. Last night she was probably woken up 3 times and then needed to blow her nose and get a drink – all challenging for her to do because she either can’t reach what she wants or can’t manipulate things because of IV tubing and pulse ox monitor on her finger. When they woke her up at 5:30, she was awake and wanted to get up. The nurse was going to get her up. However, Amanda sleeps with bi-pap and they have been playing with her settings and I remember the doctor saying that he wanted her CO2 checked first thing in the morning while she was still on bi-pap. Once she’s up we switch to the little nose thingy for oxygen. If the nurse would have gotten her up and then the blood draw person show up then the doctor would not have gotten the blood test results he wanted. I had to tell the nurse that – and she was like “Oh … I’m glad you told me” and she didn’t even have the order to do the CO2 blood test. We kept Amanda’s bi-pap on her and the nurse got the order for the blood work and we finally got her up after the blood draw. More fyi for you – a new doctor came in yesterday and didn’t like her high heart rate and immediately wanted to order her to be put on Lopressor – a cardiac drug. Probably would’ve happened if I hadn’t spoken up and told him what her heart rate usually is and how the other doctors specifically said to be sure NOT to put her on Lopressor or any cardiac drugs. So – yes – Amanda is bright and alert and sociable. But, we need to be her advocate and spokesperson for the other stuff. She isn’t crying when we leave the room, in fact she will tell me to go take a walk, get a cup of coffee, or go downstairs and browse the gift shop. We have to be here for her.

I have had email contact with the clinical nurse at Children’s today and she is having the people on her end call here for an update on Amanda and she gave me a number for the doctor here to call to give a push on our end. Let’s hope the push from both ends means a connection is made and we can get moving out of here today.

Thanks for reading.

just Laurel

No news – so not much to blog about today. Sorry.
I went home after lunch today and crashed on the couch with our big blanket. ZZzzzz. Felt so good after so little sleep last night. I think I slept almost 2 hours. Got up, showered, then back to the hospital. Had time to throw the lasagna in the oven (thanks Laurie and Lana) so I went back to the hospital with two containers, each containing a big hunk of lasagna. Yum!
Had a few visitors today (thanks Bruce & Cherie, Sherrie, and Rose) which helped break up the day. Oh – and Amanda actually got to venture outside the boundaries of her room today. Ted took her for a walk down the hall by the elevators and vending machines. Woo Hoo! Big scenic tour! haha.
Now I am feeling good vibes for tomorrow – Monday. I just know we’ll be headed north to Detroit tomorrow. Do you feel the vibes?? Oh Lord please may it not just be my phone vibrating.

just Laurel

Good Morning Wyandotte.

Have you ever seen the movie “Groundhog Day” with Bill Murray and Andie MacDowell? It’s about a weatherman who finds himself waking up and living the same day over and over again. Well it feels like we are living our own version of that movie: wake up to blood-thirsty phlebotomists at 6am, wash up and get out of bed, take meds, order an omelet for breakfast, then sit around all day waiting for things to change.

Oh what a night we had, though. Sleep? What’s that? I may have dozed off a little after midnight. Hard to tell. But somewhere around 1-1:30 there were nurses and respiratory therapists poking their heads in the door. Now our room is pretty much dark and it’s bright in the hall – so when you crack the door open, the light floods the room and pretty much you are awake. The pulmonary doctor was on the phone and wanted to know the settings on Amanda’s bi-pap (the machine and mask people use for sleep apnea – Amanda has used one for 5 years but because of this bout of pneumonia, they have yet to find the best settings for her – still trying to get her to exhale/blow off the CO2 her body is hanging on to). The settings on the machine were just not working. From 1:30 to 3am they were in and out, switching settings, changing masks, on the phone with the doc. Finally satisfied they told Amanda she could sleep now. I was wide awake. Hello Facebook! I got the ‘ole laptop out and was looking around – nobody else was awake to talk to though 🙁 . I think I dozed off around 4. And then the phlebotomist came a knocking at 5:30. Yeah – they turn on the overhead lights so they can see. And so night ended and we were up for the day.

Well despite the night with no sleep, all the fussing and changes paid off with a morning CO2 of 52.3 – HUGE drop from the day before where we started at 89. I am sure the doctor will be gleeful when he shows up today. I may not be awake to talk to him, though.

Still need to get to Children’s Hospital. I cannot rest until she is seen by the Neuorsurgeon and we can rule out any neurological issues. If no transfer today, I may see if we can take her there ourselves tomorrow (Monday) if we get the pulmonary doctor to concur.

Have a good day everyone.

just Laurel