Just Laurel

amanda

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I decided that this was the best way to give all of you an update on Amanda … not my usual kind of blog … but the circumstances demand I give y’all some information.

To bring everyone quickly up to speed … ever since Amanda’s awful bout of pneumonia almost 2 years ago we have been diligent in making her do daily deep breathing exercises and monitoring her oxygen levels. Part of keeping her lungs healthy also meant wearing her AVAP mask every night while she sleeps.  It’s like a c-pap or bi-pap mask that snorers or people with sleep apnea wear – it forces air into her airway to keep it open – the AVAP also literally blows breaths.

We have been struggling with Amanda the past six months to keep her mask on all night. We’ve tried everything from bribes and rewards to pleading with her for her own health and safety.  This was probably not the single reason, but her NOT wearing her mask, coupled with some pneumonia that moved in to her lungs – caused her to crash yesterday.

For the past week Amanda was having really poor oxygen numbers (we check her oxygen level with a pulse oximeter – one of those thingys they put on your finger with the red light). She did not have a cold or fever – just bad numbers and maybe a little more tired than usual.  Then I noticed she was breathing pretty shallow and I was trying to get her to cough deeply.

Saturday morning I checked on her before the ladies 8am bible study … she was up and watching TV and was alert although her color wasn’t good. After bible study I checked on her again and she was looking worse.  I packed up her oxygen machine and told her we were going to our house for the day so I could watch her.  I already suspected that we’d be at the ER with her.

When I got her to my house – her color went worse … her lips were purple and she was sweating – although she said she was freezing. I had Ted hook up her oxygen machine and had Amanda in the kitchen in her wheelchair with an oxygen cannula on her nose with 2 liters of oxygen.  Within minutes she turned purple … then gray … then slumped and lost consciousness.

The next part is a blur. Ted and I thought she was gone – right then and there. I told him to call 911.  We didn’t know if she had a heartbeat.  We grabbed her out of her chair and laid her on the family room carpeted floor.  She was gray and her finger tips were dark purple.  I could feel a carotid pulse but it was slow.  Maybe one gasping breathe every minute.  Ted was having problems reaching 911 – probably due to his panicked state on the phone but our dear neighbor Jake, a Trenton cop, heard the call and knew it was us.  I actually started some breaths and chest compressions on Amanda and then we had a room full of paramedics.  Probably 2 ambulances and 3 cop cars out front … I can’t remember exactly.  They worked on Amanda – got the AED on her but I don’t think they had to shock her.  She was still unconscious at this point.

They got her loaded up as fast as they could in the ambulance … I was amazed at how Trenton cop cars appeared everywhere and stopped traffic on West Road and Fort street while the ambulance raced through. Not the kind of escort you’d want – but it was pretty unbelievable.  Thanks Jake.

So she regained consciousness at the hospital. PICC line is in … meds … oxygen … nonstop AVAP mask … basically a case of pneumonia but with Amanda’s compromised lungs and poor breathing – it’s kinda a bad situation.  She’s stable.  We are in ICU.  She is alert and tries to talk (she’s not allowed to take the breathing mask off – her O2 sats drop too much) and is tired from it all – so she sleeps a lot.  So far we’ve not had to be intubated.

Yesterday was a tough day. Thanks to neighbor and Trenton cop Jake, to Pastor Rick, Kim Schutt, and Jack Scola for stopping by the hospital ER.  Thanks to the EMT people – you were all great and very kind.  They even checked back in on us in the ER throughout the day.  Kathy Green – your son was wonderful.  I am still numb – I think even a bit PTSD from it all.

So that’s where we are. Not where we want to be of course.  But we are here.

Thanks for all your prayers and thoughts. Things are stable for now.  No – we don’t need anything.  We’ll keep you up-dated.

 

Just Laurel

priority

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I should not have ignored the symptoms.

Oh I saw the signs a year ago. She just wasn’t acting right. Ted and I just finished talking about how we should have consulted a professional back then. Maybe things wouldn’t have gotten as bad as they did. Sometimes everything would be just fine. But then, she’d start making weird noises and I’d find her shaking. But Ted didn’t know what to do.

As long as things got taken care of, day to day, I chose to ignore things. But the weird noises she made got more frequent. We finally faced it today. She was not going to get any better. I really don’t think she will function normally ever again. We have only about five more days.

Monday Home Depot will deliver our new washing machine.

So besides going out to buy a new washer today, I took Amanda to see the neurologist at Children’s Hospital as a follow up to her little surgery in February. The doctor said she looks good and to come back to be checked in a year. Her shunt is working fine and there doesn’t appear to be any other neurological problems at this time, and we aren’t going to look for any.

We keep very close watch on Amanda lately. She gets vitamins plus a dose of iron every morning, she does breathing exercise four times a day, we monitor to make sure she uses her A-vap (like a bi-pap) machine for the whole time she is sleeping, and we are keeping track of her oxygen saturation and heart rate – writing the numbers down several times a day. Unlike my washing machine where I ignored the symptoms, I can’t ignore them when it comes to Amanda’s health.

Life can get too busy sometimes and then all the things we are in charge of tend to find their place on the rung of a priority ladder. Some things end up sitting low on the ladder. The past couple of months were awfully busy, beginning with the holiday season and having family coming and going (it was wonderful!). Besides just getting Amanda moved out and settled, we then had her pneumonia and three week hospitalization in January. February, we tried to get back to a ‘normal’ only to dive into March and see my Pop go through heart surgery and a week in the hospital. Umm … yeah … so my house isn’t the cleanest right now. (low priority) And there have been more quick carry-out pizzas for dinner than usual. But my family sits high on the ladder and their needs come first. The house can wait. The washing machine had to wait.

I do try to keep the top rung of the ladder reserved for God. It’s what we all try to do. It’s what we all should be doing. With Him in control and leading from the top, the rest of the ladder should be an easy climb.

Psalm 103:2 Bless the Lord, O my soul, and do not forget all his benefits.

just Laurel

a little help from Ben

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I am trying to decide if the outcome today was good or bad, because the news is both good and bad, in a way. So I shall try to evaluate the results in a Ben Franklin way.

Are you familiar with a Ben Franklin decision? Basically, from what I was briefly taught, if you have a choice or decision to make, you fold a piece of paper in half vertically then you put the positive or pro points on one side of a piece of paper, and the negative or cons on the other. Ben Franklin used this method and described it in a letter to his friend, Joseph Priestley, in this manner:

To Joseph Priestley
London, September 19, 1772
Dear Sir,
In the Affair of so much Importance to you, wherein you ask my Advice, I cannot for want of sufficient Premises, advise you what to determine, but if you please I will tell you how.
When these difficult Cases occur, they are difficult chiefly because while we have them under Consideration all the Reasons pro and con are not present to the Mind at the same time; but sometimes one Set present themselves, and at other times another, the first being out of Sight. Hence the various Purposes or Inclinations that alternately prevail, and the Uncertainty that perplexes us.
To get over this, my Way is, to divide half a Sheet of Paper by a Line into two Columns, writing over the one Pro, and over the other Con. Then during three or four Days Consideration I put down under the different Heads short Hints of the different Motives that at different Times occur to me for or against the Measure. When I have thus got them all together in one View, I endeavour to estimate their respective Weights; and where I find two, one on each side, that seem equal, I strike them both out: If I find a Reason pro equal to some two Reasons con, I strike out the three. If I judge some two Reasons con equal to some three Reasons pro, I strike out the five; and thus proceeding I find at length where the Ballance lies; and if after a Day or two of farther Consideration nothing new that is of Importance occurs on either side, I come to a Determination accordingly.
Well, I had to look up who-the-heck this Joseph Priestley guy was so that I could fully educate both you and myself and here’s what I learned. Preacher and chemist Joseph Priestley is generally credited with discovering oxygen (he called it “dephlogisticated air”), and more conclusively discovered carbon dioxide. He proved that plants absorb carbon dioxide and release oxygen, and invented soda pop by dissolving carbon dioxide into water to make fizzy carbonated water. This guy was a real gas as well as a preacher! I wonder if his sermons were full of a lot of hot air??
Now with ‘pros’ in regular font and ‘cons’ in bold font – here’s how I can describe my day:

We made it to the hospital without traffic or bad weather issues.
It was way too cold this morning.
We were registered and ready by 7:30am as we were told to be.
We didn’t even get called back to get ready for surgery until 10:30.
The hospital gowns at Children’s fit Amanda much better than the scratchy oversized ones at Wyandotte.
Amanda was a crazy nervous monkey who sweated like a nervous pig and was so upset she was dry-heaving.
Every doctor and nurse was very kind and patient with Amanda.
Amanda did not have any veins left since her 3 week stay at Wyandotte Hospital.
Amanda agreed to go back to the OR without us and probably talked the ears off the anesthesia doctor who had to poke several times to find a vein for an I.V.
…but he FOUND a vein for an I.V.
They shaved a little hair off her head ‘just in case’ they had to cut there so she has a bald spot.
The top half of her shunt works and drains just fine! They left that part alone. (meaning they didn’t need to prep and shave her head)
The bottom half of her shunt drained just fine. However…
They wanted to remove and replace the bottom half because it was not long enough and it was not in the correct position but … it was STUCK! The doctor pulled and tugged a bit on the lower half and it was supposed to slip out. It didn’t. Pulling too hard could have ripped a blood vessel. That’s not good.
The shunt drains just fine.
They sewed her up and kept all the parts the same – just a small incision on her chest wall.
Only a little anesthetic was used so she woke right up afterwards.
Her shunt works fine BUT they could not change anything which means we didn’t FIX anything.
If we want to try to replace the lower tubing, we can try again but we have to prepare for a six-hour surgery to do it and it will involve cardiac surgeons.

So what do you think? If you had to decide on whether today was good or bad? Well, there are more pros above then cons – but I think they all carry different weight.

Bottom line is that the surgery was quick, easy, and relatively non-invasive. We are happy to be home and Amanda feels good. And we know that her shunt drains well. But we didn’t change anything. Ted and I were hoping to find and fix something that was ‘broke’ so we could see other repairs and improvements (lower heart rate, less apnea, steadier eyes).

So … we’re going to let Amanda recover and enjoy life in her apartment.  We will go back in 6 weeks to consult the Neurosurgeon again.

Oh, Ben, what would you do now?

Just Laurel

I want my blankie

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All children have their funny quirks. Amanda’s younger sister Kristen, had hers. When Kristen was a baby and at that age when babies can sit up and crawl, we found out that she didn’t care for the grass. There were many warm, sun shining days that I would go out in the yard with Amanda and baby Kristen and I would lay a blanket on the grass to plop Kristen on. Kristen would crawl and play, but she would not venture off of that blanket. It was quite a handy thing because we never worried about her disappearing into the shrubbery. One time, forgetting the blanket, we plopped her down straight on the grass. Kristen immediately squawked and fussed. We turned to find her sitting on her diapered bottom with bare hands and feet in the air, just balancing there. She didn’t like the feel of the prickly grass on her skin! That’s why she never ventured off of the blanket! Of course we found it adorable.

Amanda loves her apartment. Immediately after getting out of Wyandotte Hospital a week or so ago, she wanted to go to her apartment. She wasn’t too thrilled when Ted and I made her stay with us at the house for a few days. We needed to keep a watchful eye on her for our own peace of mind. Now that she’s been at her apartment for a week, she doesn’t really want to leave. Her apartment is warm (not cold like our house where we keep the thermostat down). And her apartment is small – just her size. She knows where everything is and can keep everything in its right place. She’s a homebody.

Tomorrow Amanda is having surgery. She really doesn’t want to leave her apartment. I don’t blame her. Like baby Kristen who did not care for the itchy uncomfortable feel of the grass on her skin, Amanda does not want to feel the uncomfortable sensations that a hospital stay will bring. She just got done doing that for three weeks! Kristen wanted to stay on the blanket. Amanda wants to stay at her apartment.

But we must do what needs to be done. I don’t want to go. We’ll be up early and down to Detroit by 7:30am. Yuck.

If only we could stay on that nice safe blanket called home. But there’s a whole world of answers out there to discover.

Here’s hoping and praying that our journey tomorrow will be quick and easy. We don’t want to get lost in the shrubbery! And that tomorrow night we can plop Amanda right back down at her apartment.

just Laurel

short shunted

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Surgery next week. Yeah, Amanda freaked out. They offered Friday as a surgery date but I thought two days away was too soon.

Our trip to Children’s Hospital was interesting. Amanda had not been there as a patient since 2004. Thankfully, the neurosurgeons continue to see the adult spina bifida patients. After several head and chest x-rays and a head CT scan, we heard from the doctor. First and foremost, he was interested in whether her shunt was working correctly. Allow me to refresh: Amanda’s shunt is a tube that goes from inside the ventricles of her brain, comes to the surface of her skull (under the skin) then snakes under the skin down her neck and to her chest just below the collarbone. It then gets threaded into a blood vessel that takes it to the superior vena cava and to the right atrium of her heart. It’s purpose it to drain off the excess fluid surrounding her brain and the ‘sucking’ motion of the beating heart pulls the extra fluid down where it is absorbed into her bloodstream. On the x-ray images the top end of the shunt in her head appeared fine. The lower end, however, was not where it should be. It was ‘short’ and not in the atrium. If a shunt is not draining as it should or placed where it should be – it can disrupt all kinds of neurological function – and the fact that it is near but not in place in the heart could be why her heart rate has been funky and fast. So in surgery next week they will simply access the shunt tubing by making a small incision below her collarbone. They can disconnect her tubing there and test both the upper end to see if it is good and they can thread in a new, longer, lower end to make the placement better. We could conceivably have this all done out-patient and go in to the hospital in the morning and home in the afternoon. (I hope I hope I hope) Worst case scenario is they find the top end plugged and have to replace that end – meaning a bit of a head shave and an overnight at the hospital. Then we wait to see how Amanda does – wait to see if it makes a positive difference in how she feels, acts, etc. If she still is having unresolved issues then we take a look at a possible Chiari issue – but we can’t look at that until we start with proper shunt function.

So I am happy with the decision. I feel like the surgeon is working conservatively and trying not to open a whole can of worms. Start with the basic shunt function and make sure it is working perfectly – only disrupt what you have to. If that doesn’t solve things, we’ll take the next step and look some more.

Sorry to bog you all down with such a long medical explanation – some of you probably like it and now that you’ve read it I don’t have to repeat it a hundred times! Amanda is a complicated little bundle of health history, surgeries, and medical complexities!

Thanks for reading. Sorry, again, for the medical journal. I shall try to be more inspiring and witty tomorrow!

just Laurel

btw – surgery is Tuesday

weary

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Yes – home is a good place to be.

The past three weeks with Amanda in the hospital were not fun at all. They were exhausting. It’s like being gone on a vacation out-of-town for three weeks and then coming home to play catch-up on the bills, laundry, and house cleaning. Only it wasn’t a vacation. And Amanda is still on the mend. She wants to go back to her apartment (which is a good thing) but she is still a bit weak and her staff has to be made aware of what to look for in regards to Amanda’s health, and of the new meds and treatments she has now.

Our next step is to get her evaluated at Children’s Hospital, so we are resting up for that. We are going on Wednesday.

I get to go to work tomorrow – I like my job! Ted and I are taking Amanda to her apartment for the day. We’ll see how it goes. She just seems a bit weary. We all are weary.

Isaiah 40:31 But those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
they will walk and not be faint.

Hope all is well.

Just Laurel

day 21 part 2

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We are home HOME H O M E !!

Feels great – I want to crash on the couch with a big blankie and just relax and fall asleep.

No more blogging for today … going to relax and feel at home – finally.

just Laurel

day 21

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We’ve been here three weeks!

We’ve been here three weeks.

We don’t exactly want bragging rights for that little fact.

The new bi-pap is lovely, as lovely as bi-pap machines can get. It’s actually quieter than the one Amanda has at home and used previously. Amanda loved the new mask that came with the new machine – it fit quite comfortably and she slept well. I am getting the hang of sleeping in a chair. (again – not a fact I am seeking bragging rights for)

Her morning PCO2 was 46 – just one digit away from ‘normal’ but I am sure it is close enough to please the doctor. Interesting that her PCO2 now has been in the 40’s the past three mornings – which is good. But last evening after being up and about all day her PCO2 climbed up to a 60. They also did a pulmonary function test yesterday on Amanda. The last one she had was 5 years ago after her last bout of pneumonia. Her lung capacity decreased only 5% from five years ago – so not much of a drop considering it took five years to drop that small amount. I think the doctor liked that – he actually was chatty and smiled a few times last night – I believe he was actually surprised (and pleased) at her progress.

So Amanda is up in her wheelchair, wearing a fresh hospital gown, looking light and fluffy following her morning hair wash (thanks mom), has partaken of her morning ham and cheese omelet, and mom has had her vending machine coffee. We are now stuck in a Cinderella limbo. Outside I can see my van parked in the parking lot. Like Cinderella’s carriage, it awaits to take her to where she wants to go – home. But Cinderella-Amanda can only go to the ball (home) IF the pulmonary doctor okays her discharge and gets all the paperwork and prescriptions and instructions written out, IF the medical supply place gets a tank of oxygen delivered to us at the hospital (She has been on 1.5L. of oxygen during the day but she has not even needed it today – doc said as long as she stays at 94 and above on her O2 sats – she can stay off but to be on the safe side they want a tank of oxygen with her for now), and IF the heart doctors don’t screw things up for us. The pulmonary doctor is still bothered that Amanda’s heart rate runs so high – the cardiac doctors were already consulted, did a heart ultrasound, and have said that her heart looks great – but pulmonary doctor would like to see it lowered. I think I will beg them to let us go home and promise to bring her back for them to scratch their heads about this on an out-patient basis. So, IF all the little things get taken care of – I don’t see why they can’t let us go. I know that we have some things to follow-up on but enough is enough.

So we sit and wait.

just Laurel

day 20

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Finally.

Slept like a log last night. Went to work this morning. Huge thanks to my bff Clara for coming to hang with Amanda so Ted could go to work at 11am today after spending the night here. Thanks to Cathy T. for stopping by to visit and bringing brownies and diet coke and other yummies. And …

The ‘machine’ is HERE! Woo hoo! It’s a lovely little specialized bi-pap … very quiet … very compact … tried it on Amanda and she loved it. So now we sleep with it tonight at the hospital and get the A-OK tomorrow morning from the doctor … and we’ll be home for the weekend! Okay – okay. I won’t get too excited ‘cuz ya never know what kind of snafu’s may happen but it’s looking good.

btw – her PCO2 this morning was 44.3 – normal AGAIN. Things are looking up. We still plan on a visit to the neurosurgeon – but that will be next week on an out-patient basis and after we’ve rested for a few days.

Things are looking up.

just Laurel

day 19 part 2

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Houston …. we do not have lift-off.

Apparently the insurance company has put our request under review. I guess they’d rather pay for us to stay another day or two at Hotel Wyandotte Hospital then send us home and simply pay for a piece of equipment. How generous of them.

And fyi – Amanda has insurance under Medicaid – so for all you who voted for Obama – here’s a taste of the fine medical care he has in store for you. Fast and efficient with wise spending of your tax dollars.

Sorry for my attitude.

just Laurel