son

Elijah Crohn's Update 3.6.15

in

Brief update after Elijah's first infusion of Remicade.

Infusion - Elijah's first infusion went great. Stayed at Ronald McDonald House (RMH) Monday night and infusion was first thing Tuesday at Lurie Children's in Chicago. Given Tylenol, Benadryl, and Remicade. Benadryl made him a grump for a bit, but the Remicade had no visible effects. Seemed to take it great. Very proud of our boy. 

We took a photo next to a Lurie pillar (below) so we can track his growth with each visit, if we can remember to take the picture. :) We are believing that God and doctors and meds will get our kid healthy and growing. Praying toward that end.

Ronald McDonald House - E was a little bummed that we stayed Monday night and not Tuesday night because on Tuesday there were free tickets to Northwestern vs Michigan basketball game. More bummed to know it went to double OT!

Next Appointment - We set up next three appointments. Next one is Tuesday March 17. We got the big room at RMH the night before so we can have all six of us there and that will put us in the city for St. Patrick's Day. Big celebration is Saturday and we'll miss that, but hoping the river will still be bright green for the kids to enjoy! 

Test Results & Other Health Issues - A bone scan and blood tests have shown Elijah's bones are weak and vitamin D is way too low. We knew this was possible and the doctor already had him on supplements just in case, but now we know these are real issues. He is on serious doses of vitamin D and calcium. 

City & Stuff - We are trying to make these appointments fun enough to keep E encouraged. So we saw some sights Monday evening, especially noticing some architecture since E's working on a project about being an architect. He took a lot of pictures. We perused shops on the Magnificent Mile.

After the infusion and before leaving for home on Tuesday, E and I dropped Molly at the parking garage and walked in the rain for a couple of blocks to get to Do-Rite Donuts. Those are the best donuts I've ever had. And as someone who has never been a huge donut fan and NEVER go out of my way to get one, this place will get our regular business, you know, for the sake of Elijah. :) If you are in Chicago, I highly recommend finding a Do-Rite old fashioned donut. 

Elijah Update - 2.2.15

in
Elijah (14) with his best friend and brother, Daniel (12 this month).

Elijah (14) with his best friend and brother, Daniel (12 this month).

Brief update.

Elijah's hip has been significantly better. Not completely better, but much better than a few weeks ago. He's had other issues, including problems that come and go with his knees, but nothing earth shattering. He's even taken a few swings at the batting cages and he felt better than he expected. Could be a result of taking Celebrex daily. But still doesn't walk around like a healthy kid. 

E has upper and lower GI tomorrow so no food for him today and we are gone much of the day tomorrow for the test (leave early am, 10am test, at home in the afternoon). I have no idea how much we might learn immediately after the test, or if we won't learn much until next GI doc appointment. Prayers appreciated. This test is a pretty big deal for our little guy. Praying for answers.

Elijah Update 1.21.15

in

Previous Updates:  First, Second, Third, Fourth.

Yesterday we took Elijah back to the Shriners Hospital for Children in Chicago to meet with their rheumatologist at the request of the two main pediatricians there who have been working with Elijah and who have thus far not figured out why he has fluid in his hip.

It was rather revealing, though there is no clear diagnosis yet. What we learned we feel finally gives us some solid direction and seems to finally make some sense out of his current symptoms as well as previous problems. 

Before Rheumatologist - Molly was doing some reading on the Mayo Clinic website on juvenile arthritis and it revealed that when kids have arthritic problems they can have complications that include eye problems and growth problems. We had discussed with his hospital doctors that a year ago Elijah had a pretty bad but treatable eye problem that happened for no apparent reason and we've been concerned about his growth for years. Some of you know he's been going to various specialists the last few months to figure out why he hasn't been growing much the last few years. This made us more eager to see the rheumatologist.

Rheumatologist Appointment - A younger doctor came in to get the whole story and to give him a preliminary test of his joints and mobility and all that. It took some time. Then she went to discuss with the main rheumatologist. That took some time. Both doctors then entered and here's what we got.

Everything is Linked - While she didn't want to jump to a diagnosis without more tests, she fully believes the growth issue, eye issue, hip, and other ongoing unexplained aches and pains are all related. What's most important is finding out if this is from a possible intestinal problem or juvenile arthritis problem. 

Arthritis - She called his hip issue "arthritis." I said, "So it is arthritis?" She said in the broadest definition it certainly is, though it might not be because of a more comprehensive and serious arthritis problem. Any joint inflammation like this is arthritis and a lot of people can have an isolated bout with something like it, often is caused by other health problems. The issue now is finding out the origin of the hip problem to see if it's directly or indirectly an arthritis problem. 

Next Tests - We are thankful that the next tests she wants has been on the schedule for a few weeks. Because of his very slow growth he's seen multiple doctors, and most recently a gastroenterologist. He has already scheduled an upper and a lower GI scope to see if there are any abnormalities or signs of intestinal diseases or problems that would cause slower growth. Some blood tests and a stool sample seem to show inflammation, and that could either be coincidental, from the hip inflammation, or something GI related. So the rheumatologist would have requested these tests if not already on the schedule.

IF the GI scopes are positive (show a problem) the rheumatologist is confident the GI issue is the culprit and responsible for the other problems. IF the GI scopes are negative she believes the arthritis issue may be the central problem and that will require more tests as to exactly what the issue is. She explained an example of a kid with an arthritis problem that when finally diagnosed and treated resulted in a massive upswing in his growth. We would love to see something like that! 

For Now - The rheumatologist has prescribed a powerful anti-inflammatory. No PE until we figure something out. He couldn't do it anyway. He isn't using a walker anymore and his limp is nearly gone. His range of motion is almost back to normal, but I don't think he could jump or run. Certainly no quick starts or stops or side-to-side motions that put much pressure on the hip.

Schedule - Elijah's GI scopes are scheduled for the first week of February and return visit to the rheumatologist follows on the 17th of February. We should know some immediate results after the GI scopes, but full info won't come until we meet with his GI doctor and then the rheumatologist. 

Sidenote - With all doctors in the room yesterday, Elijah unleashed a massive nosebleed. It was an awesomely bloody mess. 

If there's something I'm missing or a previous issue I haven't updated, please let me know. I'm trying to be as complete as I can. Thanks again for kind words and ongoing prayers for Elijah.

Elijah Update - Tuesday

in

Wanted to get an update up Monday after arriving home, but just didn't find the time. Here's where things are with our 14 year old son. Check out previous posts for a full day-by-day: First post, Saturday update, and Sunday update.

E crop.jpg

Getting Home - We got home midday Monday and immediately discovered we were driving on an almost completely flat tire. A large screw was in our rear left tire and I had to head right back out and add air then make an appointment to fix the tire while Molly napped yesterday. A flat tire after a long drive leads to scary what-could-have-happened thoughts! God in His mercy brought us home safely. And the trip went very quickly, probably 75 minutes. When Danny and I came home on Thursday night to resupply, it took four hours after never going faster than 35mph in blizzard-like conditions. 

Diagnosis - There is still no official diagnosis other than fluid in his hip. The new MRI's didn't reveal anything new that would help a diagnosis. Nothing in the bone or tissue that tell a story. And nothing in the final analysis of the culture from his hip fluid. The growth in his hip fluid culture ended up being described as a contamination, as I explained Sunday. 

What's Next - We take E back to Shriner's on Thursday (yes, in two days) to see his pediatrician there. We return again next Tuesday to see a rheumatologist. He hasn't seen a rheumatologist yet, but without a clear diagnosis they need to keep trying to figure this out.

Elijah is using a walker and will hopefully return to school on Wednesday. He can get around without the walker, very slowly, but the walker gives him comfort because he's nervous about tweaking it as it's still a sharp pain. He also likes the walker because it will help kids at school give him space so they don't bump him in the hallway.  

Thanks - Thanks again for all your thoughts, prayers, food, and everything else that has been done to help. We are so blessed.

Elijah Update - Saturday (1/10)

in

I'm writing this on a public, hospital computer, so forgive any issues with the post. The system isn't letting me update the previous post so it's easier just to add a new one. 

Elijah has now been given at least one more night here, and maybe a few more. Still up in the air.

E is leaving with Molly by ambulance (sans sirens) to Lurie Children's Hospital today for another set of MRIs. More blood tests are being done as we speak. The fluid culture from his hip is in process and something is growing in it. That means there's something that's in the fluid and the tests should reveal more about the nature of the fluid and how to treat it. He's still on antibiotics, and hopefully they'll find out it's the right sort that treats whatever he has. If not, they'll change it once they know more. 

There's a decent possibility at this point that what they didn't do during the first surgery will be done in the next day or two, which is opening his hip and irrigating/cleaning it out. The doctor this morning thinks that will be helpful, though the new MRIs and cultures and all that will help with that decision. We really hope that isn't necessary, but we'll see. If it happens it will leave him and us here longer.

Pray for the doctors to figure this thing out. For Molly to rest well and that her stay won't aggravate symptoms for her health issues with Chiari that often crop up when sleep is poor and stress is high. 

Pray for my church, Doxa, as I'm not going to be there tomorrow. My buddy, Joey, who has helped in a pinch before has agreed to preach last minute. I just LOVE good guys like him. What a blessing. 

Danny and I are staying at the Ronald McDonald House near Loyola Hospital, which is an amazing resource. It's 20 minutes away. We may only get one more night because others are coming in who have planned this long in advance. Please pray they'll still have a room for us if we need it. I don't want to go home with Molly still here as it's really helpful for Elijah and for Molly to have us here, for E to be able to play with Danny, etc. We don't have the money to stay somewhere else. But everything has been provided as needed so far, so we trust God with whatever comes next. 

Elijah is Hip - Health Update

in
Physical therapy Friday morning.

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! :)

----------

Elijah, pre-procedure.

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.