Elijah is Hip - Health Update

Physical therapy Friday morning.

UPDATE Friday Morning (1/9) -

All future updates will start at the top with the oldest updates at the bottom. Right now I'm home with Daniel and Molly is with Elijah at Shriner's Hospital in Chicago. Daniel and I will be likely leaving at some point today to return to the hospital. Looking into a place to stay for the night.

Elijah is eating great and walking. He's on liquid antibiotics while in the hospital and has taken his second dose as of 6am this morning. 

Molly just called and said Elijah won't be coming home today. Tough news, but glad it's because they are trying hard to figure out what's wrong. About a dozen doctors have been in to see him and they are scouring his medical issues and medical history. He's had a few other medical issues in the past, seemingly no major deal at the time, that may mean something according to the doctors. But we don't know yet. So glad to be at a hospital that's known for orthopaedics. 

I've been asked by some why this isn't simply considered toxic (or transient) synovitis. Last I heard, it's possible. But duration of his problem, extent of his pain, his age, and a lack of other tell-tale signs keep the doctors guessing and concerned it's something else. I know that some form of arthritis is being considered, but again, don't know yet. 

As I understand it there is more testing going on with the fluid aspirated from his hip as well as a bunch of smart people trying to make sense out of all this. At this point I'd say we are hopeful this is something simple that will go away with antibiotics or by some other means. So far nothing serious found other than fluid. We are also realistic that the doctors aren't satisfied with a diagnosis and we are prepared that this may go on a while before it's resolved. More when I have it.

SIDE NOTE: The nurses are just in love with Elijah. Apparently he is very cute with adorable eyes. So he has that going for him! :)

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Elijah, pre-procedure.

Original Update Thursday Night (1/8)- Thanks for all who saw updates on Twitter and Facebook about Elijah today and who have shared thoughts and prayers. Here's a late night update on how we got to this point. 

Elijah has had hip pain for about 11 days. At different points he could barely walk and has had two sets of xrays, MRI, two sets of blood tests and then our first visit to a specialist today because he's not getting better. The only diagnosis so far is fluid in his hip joint area. After a few doctors consulted together today they decided Elijah needed a hip aspiration to remove and test the fluid for infection, bacteria, etc. There was an expectation that the hip would also need to be opened up and "cleaned out" as well as a possible bone biopsy. This came as a complete surprise to us this morning. All of our conversations revolved around multiple days at the hospital, a possible picc line for antibiotics, a home nurse, and therapy/recovery. 

In surgery a few hours later the fluid was partially drained. Tests showed no infection or bacteria, at least upon first check. Good news! So good (and unexpected) that the surgeon decided not to clean out the joint or do a biopsy. Huge relief. The problem is he still finds the fluid buildup as a mystery. So does the battery of docs working on this. 

Elijah is starting antibiotics tonight and physical therapy in the morning. We think he'll be able to come home tomorrow (Friday) but nothing is certain. Molly is staying with him tonight and I brought Danny (11) home with me. It was the most dangerous drive I've taken in my life after several inches of snow today, 35+mph wind, and severe drifts. We saw two cars ditch themselves in the last 10 miles. Unreal & terrifying.

Danny and I will have to drive back tomorrow and hopefully bring E and Molly home. We are still very concerned because they can't find a cause to this thing. Maybe it will eventually take care of itself. Maybe the docs will figure something out. I'm too tired to guess what might happen next. Thanks for your prayers. Appreciate all of you.

Molly & Chiari Update 4.27.12

Here's the latest on Molly, with a bit of an overall recap because I keep getting questions that I have only answered in some places. Here's where she (and we) arel. I have been cautious about posting some of this because when improvements come, sometimes they go away again. But things, at least at this point, are looking up in all areas.

MOLLY'S CHIARI SYMPTOMS

Molly's Chiari symptoms have included brain fog (significant difficulty thinking about most anything), balance, muscle fatigue, being easily overwhelmed, and more. I can say today that all these symptoms have been slowly going away for a couple of weeks now and mostly gone! She is back at work at our local elementary school. It's still more difficult than before all this, but she can do it now. Because the symptoms are going away, she's also able to be more involved with our church. Just a couple of weeks ago the slightest bit of loudness or being in a conversation with friends could easily overwhelm her. She would walk out during songs because it messed her up. And then it would devastate her ability to do anything for the rest of a day. Now those moments aren't happening nearly as fast or often, during gathered worship or elsewhere. I'm still protecting her quite a bit until I'm confident she's stable in her health, but things are improving significantly and she is able to do a lot more. God is so good.

MOLLY'S SLEEP

Molly's biggest problem at this point is sleep. Bad sleep = worse symptoms all around. But praise God her sleep is improving too!

Until a couple of weeks ago, she only had a slightly better night's sleep here and there, but nothing to write about. And when I say "slightly," I mean she slept maybe a couple of hours a night, and even that was intermittent. Now she's about 5 days in to an improving sleep schedule. A few days ago she mentioned that she was sound asleep when the alarm clock woke her. That was the first time that happened in months. Typically she was not falling asleep, not staying asleep, and wide awake long before time to wake up (which was 5am!). Now, all elements of sleep are getting better. But this is the area of greatest concern at the moment and we are guarding her sleep schedule.

Just to be clear on a couple of things...

• MRIs: Nothing shown to be wrong. Nothing can be surgically fixed.
• Neurologist: Dealing with symptoms and sleep issues. Seems to have helped slowly but surely. Probably won't meet or change anything with these solutions for a while.

Thanks for all your prayers. Pray her health and sleep continue to improve!

Molly & Chiari Update 3.26.12

As we continue to wait for some news of Molly's MRIs from her neurosurgeon, we decided it would be good today to have her see her local physician. She got to see Molly's symptoms in full bloom. Really bad. Lots of tension, emotion, frustration. But those things helped her doctor to see all that's wrong and the need to do more.

Molly had a blood test to check a number of things. Her neurosurgeon thinks it's possible there are other issues that are making her symptoms worse. It's at least worth a try.

Molly now has a neurologist appointment tomorrow at 11:20am. We are hoping that will offer some answers, or at least get some fresh eyes on her problems and see what comes of it. 

Just trying to keep everyone in the loop. Thanks for your prayers! Many local friends have been generous and supportive. Very thankful for that.

Side Note: Notice in the picture how Molly is gripping her knees tightly with her hands. She didn't know I was taking this, but she is continually experiencing that kind of physical tension and mostly can't help it. Thought it might be helpful for you to see something like that, which I didn't notice until after I took the picture. Also note, the room was decorated in Cubs paraphernalia, which means she's doomed to at least 100 years of frustration. :)

Molly & Chiari Update 3.7.12

UPDATE 3/7 at 4:20pm: Molly's MRI has been scheduled for 2:30pm on Friday, March 16th at the University of Wisconsin Hospital in Madison. Last time it took just over 3 hours (if I remember correctly). 

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It's been a long time (over a year) since my last post on my wife's 4 1/2 year struggle with Chiari I Malformation. Find out about her diagnosis, symptoms, surgeries, and more in my series of posts: Molly & Chiari. Here's a brief, but important, update.

Molly's symptoms are returning in a significant way. This has happened before, as you can note from previous posts. A few times they have subsided. But they don't always, which is why she's had brain surgery twice. We live with the understanding that at any point something can happen that causes her spinal fluid flow to decrease and that would result in another surgery. Her stent could dislodge or clog. Scar tissue could form around it. Or maybe something else we don't anticipate.

Currently her symptoms are headaches (significant ones, some have led to vomiting), numbness in hands/feet, difficulty thinking or "brain fog," balance problems, continuous physical fatigue and weakness, nausea, waking without feeling rested, etc. She is easily overwhelmed. A trip to the store with all the colors and sounds and busyness can be difficult for her to endure. At times she has to find a quiet place and just stop because of the sensory overload.

This time around the symptoms have started and have kept increasing over a longer period of time. That may not mean anything significant and she may eventually recover. But it's bad enough right now that her neurosurgeon, Dr. Frim, wants another set of MRIs done. I've been emailed the MRI order just a few minutes ago and we will be working today to schedule an appointment as soon as possible at the University of Wisconsin in Madison. After reviewing those images, Dr. Frim will be able to see if something is wrong and if we need to make an appointment with him.

We'd appreciate your prayers for healing and strength for Molly. For comfort. For peace in times of great frustration. For a deep trust in the goodness of God. For me as I need to serve her well, help with the house and kids, help her shop, etc.

Thanks as always to the many friends (and many others we've never met!) who have been prayer warriors on Molly's behalf. To God be the glory.

Molly Update 11.9.10

It's been a long time since I gave an update on Molly, mostly because there has been nothing new. She has been great. That started to change a month ago. 

Over the last month Molly started to experience small, though not insignificant symptoms from Chiari. Read all the old posts on Molly & Chiari. Or check out an initial post from 2007 on what Chiari I Malmformation is.) On Friday she woke with a massive headache that caused her to vomit most of the day. Late Friday that was done, but other symptoms began and were full-on. She easily loses her balance, struggles to finish thoughts (brain fog), gets easily overwhelmed, has significant muscle weakness and some numbness in her arms and legs, and more. It's been consistently bad since Friday.

That's not a long time, and she has dealt with some symptoms from time to time and had them subside. That happened last year. But it hasn't been this bad since before her last brain surgery. We still are hoping and praying for the symptoms to go away, but they are bad enough that contacting Molly's doctor was necessary.

I emailed Molly's doctor, Dr. David Frim, at the University of Chicago Hospital. He responded today and said that it's time to initiate another evaluation. We are waiting for his assistant to respond and, we assume, make an appointment for us at U of C. We don't know anything about what tests that may require (MRI, spinal tap, etc). 

We have prayed for the symptoms/problem to go away, but were talking today about how God's power will be made perfect through her weakness (2 Cor 12). I'm assuming that's why she wanted me to use the above graphic for this post. :)

I'll post more when we have more info. If anyone can pray, please pray for God to be glorified through this, and to be merciful to Molly.

Also, if you can, pray for me as I will be spending a significant amount of time with her as she is losing ability to be out of the house for an extended period of time on her own. We ran errands on Monday and I don't think she could have done it without me there. This is on top of tough times in our church where money is tight and I'm busier than I've ever been. This is going to put significant strain on our family and we need His strength for all of it.

Thanks friends. We appreciate you.