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

Still at Wyandotte Hospital.
No changes.
Children’s Hospital is still full so Ted made me come home to get some sleep. I didn’t want to leave him or Amanda. He made me – I know he wants me to get some rest.
Hoping for a bed to open up in the morning so we can get transferred.
Thanks to all who take time to read this and take time from their own busy lives to offer prayers for Amanda.

just Amanda

Have heard from the clinic nurse at Children’s Hospital. They are waiting for Amanda to get there. The neurosurgeon, Dr. Ham called me personally and is waiting for her too – says they need to look at her shunt or a possible Chiari problem. They know she’s coming and waiting for her … there are no beds available at Children’s! Pray a bed becomes available so we can get Amanda transferred over there asap.

just Laurel

Still waiting to be transferred to Children’s Hospital. Thought I’d take the time to explain it all to you.

For at least a month prior to Amanda getting pneumonia, I just had a hunch that something wasn’t right. She was hard to wake in the morning, napped a lot in the afternoon, and her eyes were doing funny things (nystagmus if you want to look it up). Since leaving the care of Children’s Hospital at age twenty-one, we’ve been fortunate not to have to need a Neurosurgeon. Amanda has a shunt in her head and has had more neurosurgeries than I can count. But we never found another neurosurgeon to see. I recently discovered that the neurosurgery group she once saw will keep seeing their young spina bifida patients – even as adults. They will even do surgery on them at Children’s. I actually made an appointment for Amanda to see them the end of this month because of my concerns.

Now when shunts plug up and do not drain right they can create all kinds of symptoms. Many of the symptoms are the same as the Chiari malformation I spoke about in a previous blog. Just keep in mind that both of these are conditions that affect the central nervous system … like consciousness … and breathing … and eye movement … and swallowing … etc etc. It is my gut feeling that Amanda has something neurological going on that is making her sleepy, making her eyes wacky, giving her a fast heart rate, and depressing her breathing. I don’t deny that we just got her through pneumonia, but I believe that these neurological symptoms exacerbated and made her pneumonia worse.

The pulmonary doctor here is wonderful and renowned. He has done everything he can for Amanda short of giving her a tracheotomy and sending her home on a ventilator. That’s what he thinks she needs next for proper lung function. Ted and I say (to ourselves) that he is treating the symptoms and not the cause. I think we have to explore the neurological factor because if her breathing is shallow, if it is absent at night (sleep apnea), and she has a sleepy level of consciousness, then of course it will contribute to poor lung function. You have to be awake and breathing and breathing deep in and out for proper lung air exchange.

Maybe Ted and I are in denial. But Amanda simply has no history of respiratory problems except for this pneumonia and the last time she had it, five years ago, when she bounced back strong. How could she go downhill so quickly unless there were other contributing factors? Ted mentioned to me that the pulmonary doctor here is probably used to treating old people in end stage lung disease. Our hope is that we can get a neurological solution at Children’s and if it truly is a lung issue, maybe we can get some insight and treatment from a pulmonologist at Children’s who is used to seeing kids like Amanda with multiple handicaps?

That is why we are going to Children’s. Amanda is still retaining CO2 at a dangerously high rate. We must look at her neurological system to be sure it is all working right to give her the best chance at recovery. If it is not a neurological issue, then we have to accept that her small lungs are finally getting tired of working so hard. Then we may have some decisions to make. But like Ted said, “One decision at a time.”

Just Laurel

Just heard that they are working on transferring to Children’s Hospital … phone calls and phone calls to make it happen. It might be some hours until we actually go. At least we are going.

just Laurel

Amanda’s CO2 level is no better today – her lungs are still not blowing it off like they should. Waiting to talk to the pulmonary doctor. He is the primary doctor on her case so it will be up to him whether and when we transfer.

Ted is here and I could go home to shower. No hurry though. Even though we are just sitting here, at least we are spending time together. Home is lonely right now as it is either him or myself home alone.

Sitting and waiting.

Waiting and sitting.

just Laurel

Noooo! We are in the double digits. I don’t like this at all.

Amanda and I both slept as much as you can sleep from about midnight until 6:30am. Waiting for morning blood test results. She is up and in her wheelchair and devoured the whole ham and cheese omelet she ordered for breakfast.

We are in ‘hover’ mode waiting for what is to happen next. There is talk of getting us to Children’s but I guess there is lots of phone calls and paperwork that will happen before we get there. Amanda is stable and unchanged. They aren’t really doing a whole lot for her right now.

Waiting. Waiting. Waiting.

I’ll update you when there is news.

just Laurel

It’s been an emotionally torturous day.

After getting up and eating breakfast, Amanda simply wanted to go back to sleep. Understandable that one would need sleep after recovering from pneumonia. But she slept, and slept, and slept. We tried to talk to her to wake her and she would open her eyes slightly to look at us. Questions addressed to her were answered with a shake of the head. And she slept more. They took another blood sample in the afternoon to check her CO2 retention. We thought for sure it would be good since she had been sleeping all day and letting the bi-pap on her face help her breathe. The test took a dive and the results were bad – even more CO2 retention. It was about 4pm when I decided to run home quickly to change clothes and take a breather before my turn at staying the night. I drove home sobbing that her condition was worsening and I was afraid we were losing her. She wasn’t improving. She was getting worse. There was nothing more they could do for her. Nine day later and she wasn’t getting any better.

Then I come back at 5pm and she has decided to wake up and get into her wheelchair. Really? She’s hungry and eats dinner. My parents stop by and she is chatting, semi-normal Amanda. The whole time my parents are here I stare at her in confusion. Being tired doesn’t help. The ups and downs are just wearing me down.

Nine days ago we brought her in to the hospital looking very sick. Things went from bad to worse and she ended up being intubated and on a breathing machine. Amanda has always rallied and bounced back after hospitalizations. After getting her tubes out, finishing up her I.V. antibiotics, and getting breathing treatments, her lungs sound clear and look great on x-ray. It’s time now for her to start begging to go home. Blood work still shows a very sick girl and we’ve got all the neurological signs that something is off. Her sleep apnea has worsened, her pupils were dilated this afternoon and not equal, and she keeps swinging from alert to limp. But this evening she talked about going home. It’s been torture, emotionally, to watch Amanda decline so quickly and then suddenly rally and sit up like everything’s normal. It confuses this tired mind. Doesn’t help that I have practically lived at the hospital for nine days, going home only to sleep and take care of minimal housekeeping. There are so many questions taunting us. Will Amanda recover fully? Is this the beginning of the end? Will she have to get a trach? Will she be able to go back to the apartment we just moved her in to? Is she going to be on a ventilator and will we have to move her home with me giving her 24-hour nursing care? If we get moved to Children’s Hospital tomorrow, what are they going to find? Will it require surgery? How long will we have to camp out at Children’s?

So sorry for getting emotional and a little crazed. Just frustrated and tired. Perhaps this will give you an idea of the emotional roller coaster ride we are on as we are faced with so many issues, scenarios, and unanswered questions. Ted and I haven’t been home together for nine days. Although we have been together at the hospital, it is not at all the same as home life. I had to call of work again this week – and I love my new job. No work means no pay check. And then there’s the ache of wanting Amanda to be happy and have the chance to live a full life. We thought we had just gotten her there with her own place. Now what’s going to happen?

And that’s where my mind is right now.

just Laurel