After eating breakfast, Amanda pretty much was falling asleep sitting up in her wheelchair. We put her back to bed and she’s been asleep ever since. The monitors show that all is well with her O2 saturation and heart rate but it will not tell us if she is getting rid of the CO2.

After talking to the pulmonary doctor and the neuro doctor here, it sounds like everyone is in agreement to get her transferred to Children’s Hospital so she can see the neurosurgeons who saw her years ago, have her records, and are familiar with patients like her. Have already gotten an email back from the nurse at the spina bifida clinic at the hospital so she has the heads up about Amanda and has forwarded my frantic email to the Neurosurgery group.

Let’s see what tomorrow brings.

just Laurel

‘Tis the morning of day 9.

Sigh.

Amanda (and Ted) slept fairly well – relatively speaking for spending the night in a hospital. Amanda is sitting up in her wheelchair eating a cup of ice cream and a McDonald’s hash brown for breakfast that her dad fetched for her. When you’re sick, you get whatever you want for breakfast. I have a feeling there won’t be much accomplished today. All the tests were done yesterday and things slow down a bit in the hospital on a Sunday. Maybe the doctors are all at church?

So I won’t bore you today with a descriptive medical update since there’s not a whole lot of new information. Since it’s Sunday, I think I’ll write a sermon.

Many of you are probably wondering where Ted and I are emotionally/spiritually right now. Having been down this road before, we draw strength from each other and from our faith. We look at each other and stare into tired eyes and know the pain and fatigue our partner is feeling. We can each start a sentence that is too scary to finish about what we think about Amanda and finish it with our eyes. We know and feel the prayers and support from family and friends. Thank you. God’s presence is felt and we keep our hands firmly grasped to His as we walk this path. No need for words. We are too tired for prayer. He knows our thoughts and needs.

For me personally, I simply switch into survival mode and do what has to be done. Most of the time, I keep up a strong facade and draw on God’s strength to keep going. Do I ever crumble? Oh yes. When I am home alone or driving in the car, the tears fall and I yell at God.

This morning as I was getting ready to go back to the hospital, I had time to express in words to God some of my feelings. I told Him that I understand He has a plan for everything and everyone. I said how I realize and desire for Him to be in control.

I want to back up a little bit and tell about how I came to write my book, ‘Amanda, Perfectly Made.’ I was one of those who always joked a little about the experiences I’d had and how I should write a book about it. The passion to write the book got to be a constant gnawing. It was as if God kept tapping on my shoulder, persistently every day, in hopes that I would finally do what He was asking. His prodding continued for probably a year until I finally gave in and said, “All right I’ll write a book, but I don’t know how to write a book or what it is you want me to write so you better show me how.” For more than two years I wrote, off and on and when I could. Each time, I would procrastinate until I could procrastinate no more and would sit down and pray for God to give me the words. Many times, after finally focusing and typing out a few paragraphs or chapters, I would go back to read what I had composed and would wonder who wrote that stuff. God gave me the words and I would simply marvel at how good He was at writing! I guess we should not even question His writing ability as I believe He proved Himself with His first publication, the bible.

Throughout the writing, revising, and finally publishing of the book, it was always my prayer that it would be a tool for God to use for His glory. I wanted it to speak to those who needed to hear our story and read of God’s faithfulness to us.
This morning I acknowledged to God that I knew He had a plan for Amanda and that through Him and this experience I hoped it too would bring glory to Him. But then I sadly told Him how hard it was to see Amanda hurt and suffer through all of this. Why did she have to be sick? Why did she have to hurt and be poked and prodded? Why did He have to let my daughter suffer for others to see … oh wait … that sounded familiar. Darn. Yeah. Huge message here. It was like God was letting me realize how much HE hurt to let people hurt HIS son – until they nailed Him to a cross to let Him die. For us. I had this heart crushing feeling of how God must be so sad and frustrated with mankind. How many times does He try to show us His love or send us a message through others? Through a book or someone else’s story? How incredibly painful must it have been for Him to watch His son be abused, mocked, and scorned until He died in agony for us? And even then, people reject His gift.

What has happened to our world? What has become of morals and faith and family and values? It used to be the American family almost always worshipped on Sundays. The stores were once upon a time always closed on Sundays because that’s what you did – you went to church and spent time with your family. Why are we shutting God out of our lives? He’s not allowed in our schools anymore. Church attendance for most people is only when it’s convenient. I sensed God telling me how much He hurt and was frustrated because people just don’t look for or see God in their lives anymore.

I think it’s time Christians embraced their faith. We can’t be scared or embarrassed to show our faith for this sick, immoral, materialistic world to see. I believe God is ever present and doing things all the time that people aren’t noticing and can’t see. Haven’t you ever prayed for god to ‘open you eyes’?

To God be all the glory – whether it be through a book, a sick child, the helping hand of a friend, a morning sunrise, a good night’s sleep, a clean bill of health, or the glorious gift of redemption through Jesus. Open your eyes to what God is doing around you. He is always seeking us. Let’s seek Him first.

Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

just Laurel

Another long day.

Well, we’ve had a chest x-ray, abdominal x-ray, CT scan of the head, CT scan of the chest with contrast, and the usual expected blood work. Testing all went smoothly. Do we know anything yet? No. Now we wait for the doctors to come talk about results. Meanwhile, Amanda is tired. Still swinging like a pendulum from alert and energized to limp and tired.

Now I have to educate my reading audience.

There’s this condition called ‘Arnold Chiari Malformation’ that spina bifida patients are prone to. Picture the brain as a, well, brain-shaped orb, with a stem – the brain stem protruding out the back. That brain stem holds all the nerve fibers that come out of the brain as they descend down the back. This long cord of nerve fibers is enclosed by bony vertebrae that keep the nerve fibers safe and contained in the spinal column. Imagine these nerve fibers going through this tube, the spinal column, and the tube being too tight. That’s Arnold Chiari Malformation. Nerve fibers exiting the brain get squished and compressed in the too tight spinal column and pressure on nerves is not a good thing. Think of pinched nerves that cause pain or numbness. Amanda had this condition when she was in elementary school and we had surgery to correct it.

Last night when I posted on all the spina bifida websites that I network with about Amanda’s pneumonia and all the other issues she was having, every one of them came back with the same answer: Arnold Chiari Malformation. I replied to them that she had surgery to fix that already. They replied that it doesn’t matter. Especially with her having it so young, it sometimes has to be repeated. One adult spina bifida women had it fixed 3 times. When I googled it the symptoms included: tachycardia (high heart rate – which Amanda has), nystagmus (eyes that shift back and forth – something that I’ve notice a lot lately with Amanda), sleep apnea (hello – a major problem for Amanda), dizziness (yes sometimes), nausea, and impaired swallowing with choking. All those symptoms described Amanda! So I really believe that is what we may be dealing with. I don’t deny that she had pneumonia, but I believe it contributed to her pneumonia. I don’t think I have everyone here on board with me on this one yet so I put an email out to the nurse who is head of the spina bifida clinic at Children’s Hospital to please tell us how to hook up with the neurosurgeons there. Adult spina bifida patients are welcome to still see their pediatric neurosurgeon at Children’s Hospital.

I have to believe that the neurological issues that are affecting her breathing are what causing Amanda’s pneumonia. I think the pulmonary doctor here is looking at her with blinders and seeing only lungs since he has limited familiarity with spina bifida. To ‘fix’ Amanda’s breathing issues, his next step is suggesting a tracheostomy – and I just couldn’t do that to Amanda. No no no. Everyone on the network of spina bifida websites said “Look at shunt issues and Arnold Chiari Malformation before you do a trach.” The rallying cry from all was to go see the neurosurgeon who works with spina bifida patients absolutely before doing anything.

So that’s where we are. Problem is we are at Wyandotte/Henry Ford Hospital and the neurosurgeon we want is at Detroit Children’s Hospital. Here’s hoping we can share info and get the right person to look at Amanda.

Sorry to bore you all with details – but it helps to write it all so I don’t have to explain it a million times.

Getting tired of this. Miss my home: haven’t been home with Ted in over a week now. I am here at the hospital or catching some sleep at home while Ted is here.

sigh

just Laurel

Can’t sleep. Oh I am tired! A chair in the ICU is just not conducive to sleep.

Amanda has been sleeping pretty well most of the night. Heart rate is down to a very nice range. I know we shall soon be bombarded with people seeking blood and wanting pictures (x-rays). It shall be a morning of tests and, hopefully, answers.

I did some sleuthing last night. The power of the internet is amazing! I sent messages to several spina bifida web site groups that I follow. My message was basically an “SOS” that explained Amanda’s situation and asked for help. I had people responding within minutes. Details will come later but I believe I am on to something! We will be getting a neurology consult in the morning and I can’t wait to see what we find.

Thanks for reading, following, praying.

Oh Lord I can’t wait to get a cup of coffee. Large.

just Laurel

I used to watch the show “House”. Have you ever seen it? Loved the show. There was always a patient with symptoms that were difficult to diagnose – and until they could diagnose, the patient kept getting worse until the mystery test was done that finally revealed the diagnosis – that led to the prognosis.

I feel like I am stuck in an episode of “House”.

Amanda’s condition has swung like a pendulum today. From appearing to be chipper and back to her old self, to suddenly dropping like a wet noodle into glazed eye sleepiness. We’ve given antibiotics for the pneumonia and her chest x-ray looks improved but yet she is retaining CO2 and they are talking of re-intubating her. Her whole body has been bloated like a fat sausage and we thought that breathing would be easier if we could get that fluid gone. Well – they gave drugs for the fluid and she’s probably peed 2 liters. Things haven’t improved. Her heart rate has been as low as 78 today and recently was racing up around 140. Her heart echo showed no problems with her heart. This morning after waking they got her up in her wheelchair and she happily devoured breakfast. Then the nurse gave her her meds and within eight minutes she slumped. Her face got red and she went from bright to blurry like a switch was turned. The meds were looked at – but were mostly iron and multivitamin, Pepcid and protonix – stuff that never causes reactions. She slept for hours, then rallied and actually sucked down a container of KFC’s mac n cheese and was cheerfully talking to visiting friends. She got her evening meds … then crashed again.
We have a slew of tests, x-rays, and a CAT scan scheduled for tomorrow. Hopefully, we can use the tests to rule things out and find some answers.

Pray.

just Laurel

Feels like we are hovering on the fence – waiting to see which way Amanda is going to fall. One minute she’s rallying and you see the old Amanda, and the next she is in bed, limp and sleeping. Just when the blood work comes back better, it falls the next time to unfavorable levels.

Pneumonia is bad enough but with Amanda’s squished and squashed torso, the lungs don’t have the best chance for great expansion – she’s not breathing deeply because she can’t. Her body is also bloated with so much extra fluid – that just adds to the constriction. If the CO2 keeps building up again, there are whispers of being put back on the ventilator with talk in the background of her going home with extra breathing tubes/help/machine/equipment … I don’t want to say the word of what they are talking about. She’d hate it.

Amanda surprised the doctors last time she had pneumonia. She just may pull through again this time. It’s been a long week and Ted and I are weakening. Pray for strength for all of us.

just Laurel

It stinks that we’ve been here a week already.

Sleep last night was blissful. Like a dried up old sponge dipped into a puddle of water, my body sucked in the quenching relief of rest to a weary Laurel. I could have slept much more but set the alarm for 7am because I didn’t want to sleep too long before relieving Ted. Plus, I wanted to finish up some laundry. (Ted and I now have an ample supply of clean underwear – in case you were wondering. I know I know – TMI)

Amanda is doing well as far as the pneumonia issue goes. Her lungs look good and blood work is all shuffling its’ way back to fairly normal values. Ted was with her this morning and said she got up and seemed to be fairly close to normal and even ate a healthy size breakfast. When I showed up, she was already back to bed. She barely opened her eyes to wave a hello to me, opting to focus on her desire to sleep instead. It was as if she got up feeling great, then crashed.

So, we are looking at all kind of issues now – doesn’t help that Amanda is so complicated. There’s shunt and neurological issues, bowel and bladder stuff, and just all the surgeries she’s had over the years – many that I have to explain to the doctors and nurses because they have never heard of them.

So the dragon roars and takes us on the proverbial roller coaster ride of unknown twists and turns. It makes me nauseous. (If you don’t know what I’m talking about – read the book.)

just Laurel

Wow.

The word fatigue doesn’t even describe it. Except for the two hours I ran home last evening, I was at the hospital almost 35 hours straight. Those of you who have done it will understand – you just do what you have to do. Ted’s job takes priority so I spend the days there so he can work. Tonight is his turn at the hospital. 🙂 Can’t wait for my body to be in my bed.

Amanda continues to improve. Heart doctor gave her the A-OK as well as the Endocrine doc. Just have to get a plan from the Pulmonary Doctor – my guess is that her sick lungs might need to come home with some oxygen for a while until we can wean her off of it.

Have to finish a load of laundry (Ted and I were running low on clean clothes – especially socks and undies!) and then it’s bed for me.

just Laurel

Day 6 part 2. Haha If you haven’t figured it out yet, I’ve got my laptop computer with me!

Amanda has eaten breakfast, put away a cup of ice cream, and just (tried) to eat some hospital-born macaroni and cheese. Even the extra salt I put on it didn’t help make it more palatable. Breathing is improving greatly. Heart rate is rather high and they are scratching their heads over that one, but it’s nothing too serious. Finally got some blood – the nurse who was able to grab a vein with her needle filled every possible tube she could fill so we’d have enough for any tests they could ask for.

I had to chuckle (again) at Amanda for 2 things. First thing is she has always had a history of not being able to cough without gagging and puking. Whenever she would get sick and have a cold, attempts to cough all that ‘stuff’ loose resulted in grabbing the barf bowl. Well, she is coughing gunk loose every 10 minutes and even hawked a lugi in a specimen cup for the nurse. No gagging yet. Gross I know. But grossly funny. I told her she may have just gotten good at it now and can skip the puking part.

The other funny, but more amazingly quirky thing about Amanda is despite her cognitive deficits, that girl can spell. She was phone texting a friend and telling them she had pneumonia. “And how did you spell pneumonia?” I asked. “P N E U M O N I A,” she answered. I bet a lot of adults couldn’t spell it correctly. Funny.

Another thank you to a couple of Morgan girls who sent up a darling bouquet of flowers – pretty yellow chrysanthemums with a yellow rose in a yellow happy face mug AND a little teddy bear. It was full of sunshine and cheer.

just Laurel

Day 6.

Really?? It’s been six days already.

Oh what a night. Night + hospital room does not equal sleep. Amanda was up and in her wheelchair for quite a while. It probably felt so good to be out of bed. Finally got her into bed around 11pm. However, she had to sleep with a bi-pap machine (it’s what a lot of people use when they sleep at night because they have sleep apnea) and Amanda uses one at home so she was used to it. However, there were issues with the machine as well as an unfamiliar/uncomfortable mask that meant restless sleep compounded with the machine alarming and people constantly poking their heads in the door to see what was going on. Finally switched machines at 230am and things quieted down.

Until 3am.

That’s when they started coming around to get blood work. The first person tried unsuccessfully. Half an hour later the second person failed to get blood from Amanda. Third and fourth persons have failed. Oh, if we could only figure a way to put a faucet valve on one of her blood vessels. So, we still haven’t gotten blood for the days ordered blood tests.

I must have dosed off around 6am and jumped when I felt someone touch my shoulder. It was 630am and Ted had just showed up. He made a stop at the hospital before heading for Indiana for the day. He brought me some food and I got to go down the hall and grab a cup of coffee. He is off to Indiana and Amanda and I thought we’d hang out at the hospital today.

Currently she is sitting up, coughing like a good patient, and eating breakfast.

So far so good.

just Laurel