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

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