Still here.
Amanda’s pulmonary doctor is happy with how she is doing but was not comfortable releasing her yet to home. Ted and I agree. I can measure if a wound is bleeding or if she is eating or puking but I cannot measure her CO2 – and that’s scary. So we stay. The doc said the flu was backing off and that he was hopeful we could get to Children’s soon.
So we sit.
just Laurel
Maybe it will be a lucky day 13? I just don’t know. But here’s the scoop:
Amanda seems stable now. Everyone walks by her room and says, “Are you still here?” Apparently the flu this season has been super nasty and Children’s Hospital is bursting at the seams with sick kids. Obviously, we don’t have a room yet and with the weekend coming, chances will probably be even more slim for us getting in. One doctor this morning suggested we go home for the weekend. That makes me a little nervous – but if they are comfortable with it – then I am. I already sent a note to the clinic nurse at Children’s Hospital to let her know the situation. Maybe she could push some buttons and get her in over there today. Another doctor just stopped by and said it would be up to the head Pulmonary Doctor to make the decision – home or not. I made it clear that although going home would be nice that I don’t want to do it if it’s the wrong choice for Amanda. Don’t want to risk going home and having respiratory failure.
So we are sitting on the fence – waiting to see which way we’re gonna fall. Hunkering down here another day? Getting moved to Children’s? Going home?
Stay tuned for the next episode!
just Laurel
Sorry, readers, but I must report that Wyandotte Hospital is still our home. So that’s the bad news. Good news is that Amanda had a good day. She looked wonderful (thanks to her morning shampoo) and has been up in her wheelchair all day. They had her on 3 liters of Oxygen for the past week – they squeaked it down to 2 liters to see if she could do well with that – and has done fine all day. She ate a good breakfast, noshed on Cheetohs and diet coke in the afternoon, had a cup of ice cream, and we are now waiting for Ted to bring in dinner. Tonight we are dining on SUSHI! There happens to be a fairly good sushi place near Wyandotte Hospital and once we go to Children’s Hospital in Dee-troit we won’t be browsing the neighborhood for food. The medical center rather stands alone with no restaurants nearby.
I want to shout out a big thank you to Cathy Tuxbury – a church choir friend. She came by to visit today with lots of healthy stuff – apples, bananas, and oranges plus bottles of water, diet coke for Amanda, and some naughty but delicious powder sugar dusted German walnut cookies. (I’ve eaten two already – and they are big!) Cathy and I talked and visited for over two hours. Thanks, Cathy, for breaking up our day with you visit! <3
So, in the words of Goethe: we are trying to "Enjoy what you can; endure what you must."
All is well for now. Hope all is well for y'all.
Thanks for reading.
They that wait upon the Lord shall renew their strength. They shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Isaiah 40:31
just Laurel
Amanda is up in here wheelchair eating breakfast – A bacon and cheese omelet (again) compliments of Henry’s on the River. She is sporting a light and airy look – her wonderful nurse brought in some real shampoo from her home and we shampooed Amanda’s hair while she lay in bed – rinsing with cups of water. Kudos to her nurse, Brandy. It made Amanda feel great to get rid of that grease! She’s looking good.
Waiting for a bed at Children’s.
Waiting for her lungs to improve.
Waiting for a good CO2 blood test result.
Waiting to go home.
Waiting for answers.
Do any of you remember the Sharon, Lois, and Bram show aka the Elephant Show? It was a kids show that my girls watched when they were little – I believe it was out of Canada so maybe just familiar to Detroit area people? Anyways, they sang a song that went like this (the lyrics anyways): “I am slowly going crazy, crazy slowly going am I … etc” That’s my song for the day. I googled it on youtube and actually found it – it’s pretty lame but it fits my mood – in case you want to experience it:
So many other people in my church family are hurting – and struggling – and probably going crazy today. My heart and prayers go out to them. Tom’s brother died following a tragic accident, Sue’s sister was put in hospice care, others facing surgeries, Judy’s daughter battling cancer … despite our busy lives and despite how impersonal some think the internet can make communications … I think it is wonderful how we can stay in touch and send thoughts and wishes – even though we can’t visit in person I know from experience that it helps much to know how many people care.
You’re my rock and my redeemer,
You’re the reason that I sing
Psalm 19
(took this from you Judy – one of my fave’s, too!)
NEWS FLASH … they just got back the results of the repeat blood draw and we’re just going to throw out this mornings CO2 !! Yesterday’s CO2 was 73 (and we want it to come DOWN more) and this morning’s CO2 was 95 !!! What??? The retake came in at 70 !!! Still needs to be lower – but it’s coming down! Woo hoo! Amen.
just Laurel
Good Morning Wyandotte.
We had a quiet night. Amanda slept in ’til 8am. Her CO2 took a huge climb this morning – not good – and we don’t know why. They are going to re-draw her blood with the hopes that it was a bad sample or test. She is her usual chatty self and when they ask her, “Are you short of breath? Does your chest hurt? Are you feeling okay?” she keeps answering them that she feels fine. The respiratory therapist is scratching her head and can’t understand why she is retaining so much CO2.
Ted crashed last night and slept real well at home in bed. Amanda has been stable for the past day or two and his fatigue caught up with him. He was on the road early for a sales trip to Butler, PA. We’ve spoken several times already and he’s doing fine. I worry about him with driving and fatigue so pray for him, please, for alert driving.
That’s the status quo for the day. Of course, I’ll keep you updated.
just Laurel
No room at Children’s Hospital again today. We could go any time though – even throughout the night.
I asked the doctors here if we weren’t waiting to get to Children’s, then what would be the plan for Amanda. So here’s the scoop. Even though her CO2 was down today, it still is at a dangerously high level. She is also using 3L. of oxygen during the day – so she is currently oxygen dependent. They are watching to see if the CO2 level can get down to normal levels. They are afraid if she goes home, it would work its’ way back up. When CO2 levels in the blood get too high you can go into cardiac arrest. The doctor feels that Amanda’s multiple handicaps, small size, and all the other contributing factors have just worn her down through the years. He doesn’t expect a full recovery – that she’s been breathing with comprimised lungs for a time now and it’s finally catching up to her. From my perspective, I believe there is a contributing factor – the neurological issue – that has contributed to her problems. It is my gut feeling that until I rule out any breathing problems due to central nervous system issues (like a plugged shunt or a Chiari issue – see previous blogs if you don’t know what this is) I will not accept that her lungs are failing her.
So that is why we are still here and not waiting at home. The doctors are respecting my desire to go to her previous Neurologist to check out those issues and even stated that there are good pulmonary doctors at Children’s. He also said he’d be happy to talk to them. If there are no contributing Neurological problems that we can fix then we have to go back to dealing with strictly a pulmonary problem.
We are STILL sitting and waiting and waiting and sitting. I heard from the clinical nurse at Children’s that the hospital is so full they have had to cancel surgeries because of no bed availability. So – exercise in patience. But, understandable patience. If there are kids too sick to discharge from the hospital, well I don’t expect them to be bumped to make room for us. It’s okay.
So while I sit here, my mind wanders and I recall a little verse I read once … on a bathroom wall … and it just sort of stuck in my memory banks. Maybe it was meant to lighten the mood today:
“Here I sit in silent bliss, waiting for the coming piss.”
Kind of memorable, don’t you think 😀
As I sit here with little to do but daydream and explore the world through my laptop, I am inspired to pen my own prose:
“Here we wait, don’t give us pity; soon we’ll be in Dee-troit city.”
Yeah, pretty pathetic! Just lightening the mood a bit if I can.
I shall keep you posted and if there’s no news, I’ll try some more poetry.
just Laurel
No change.
S T I L L
W A I T I N G
just Laurel
We are at Henry Ford Health System/Wyandotte Hospital. The dining service for the patients is called “Henry’s on the River” (the city of Wyandotte sets along the Detroit River). It just makes me chuckle – it sounds so elegant. So, here’s Amanda, sitting up in her wheelchair, eating her turkey Canadian Bacon & Cheddar Omelet compliments of Henry’s on the River. (hair and make-up by 11 days of going without a proper shampoo and blow-dry and scratchy starched sheets; Amanda is styling a beautiful mint green gown with a soft contemporary pattern courtesy of Medline fashions – fabric is a cotton/polyester blend and gown was made in Vietnam).
Yep – that about sums it up for now! btw – she ate her whole omelet.
Now back to waiting.
just Laurel
Good morning day 11.
Good morning Wyandotte. Yes, we are still at Wyandotte Hospital. I was able to capture some quality sleep at home while Ted and Amanda attempted sleep in good ‘ole roo m 219. Amanda is a bit more energized today. Her CO2 came down this morning – Yay – so that means her lungs are finally blowing off CO2 which makes her much more alert. She hasn’t ordered breakfast yet but made the nurses laugh at her early morning snack of diet pepsi (she prefers coke) and Cheetohs. Breakfast of champions.
I need to get Ted home. He needs a shower and some sleep. I can tell he’s sleep deprived because he starts talking too much. The doctors or nurses come into the room and he just talks and talks and talks … blah blah blah … the morning doctor was being friendly and commenting to Amanda about the balloons people brought her and Ted starts “Did you know there is a helium shortage?” “TED!” I scream in my head while I give him the look. “Well helium costs more …. and 30% of it is manufactured by the U.S. government …. and President Obama …. ” Ted continues. Oh dear Lord. I hope he goes home soon.
The neurosurgeon is waiting for Amanda at Children’s Hospital and all the paperwork is done for the transfer. We are still waiting for a bed to become available. I guess the huge flu outbreak has caused quite an overload in hospitals everywhere. So, we wait our turn.
I know God’s plan is perfect. I know His timing is perfect. One day, one decision, one step at a time.
Thank you for reading – for your care, prayers, and support.
just Laurel