Thursday, March 28, 2013

Big Layoff

After waiting on pins and needles for many weeks, we finally found out officially this week that Tim has been laid off from his job.  We are so blessed that his employer has been so gracious in dealing with his illness these last 4+ years.  Most recently, his boss had been allowing him to work from home 100% of the time since he was too sick to go into the office.  He even made accommodations for Tim to join meetings via conference call.  It was really a perfect situation for us, and we were so thankful for it while it lasted.

We aren't sure what we're going to do at this point, but we both feel at peace knowing that God is in control of this newest set-back for us.  We both feel strongly that the right opportunity will come along in His timing.  However, as of right now, Tim is too sick to look for a new job.  That means that he also will not qualify for unemployment, since a main requirement for receiving unemployment is the ability to be actively looking for work, going to interviews, etc.  We are looking into starting the process for disability, but we know that can be a very long process so it probably won't be a feasible option to get us through this time.

The one thing we weren't expecting when we got the news about his lay off was that we will be able to keep our same health insurance for several more months.  That is a huge blessing for us with all the health issues we have currently in our family, including Andrew's broken leg on top of the 3 of us having Lyme.  At least this extra time we weren't expecting will get both Tim and myself several more months into our PICC treatment, and hopefully we'll be done dealing with Andrew's leg.  As an aside, Andrew is our sweet 5 year old with congenital Lyme.  He is currently doing well despite his broken leg, and we are so thankful for that.

We will keep all of you posted as we know more.  If you would, please keep us in your prayers as we navigate this new path we're on.

Friday, March 22, 2013

Andrew's Accident



The following is something I posted on my personal Facebook page yesterday regarding our 5 year old son Andrew.  He is coincidentally our child who has been struggling with Lyme for the past 3 years as well, so we are so sad that he is now dealing with this newest health crisis. 

Update on Andrew: He was out sledding in the neighbor's yard yesterday afternoon with Sarah and the other kids in the neighborhood. At about 4:45 I was in the house making dinner and Sarah and their friend pulled Andrew home on a sled because he couldn't walk. Apparently he was sledding down the 'safe' hill and his sled somehow veered into the woods. He couldn't stop it, and he hit a fallen tree. I carried him in and laid him on my bed and saw that his ankle had strange-looking swelling. We put ice on it and called the pediatrician's office.

We ate dinner and called my wonderful father in law to come over and stay with Tim and the other kids. Andrew rested and ate dinner and slept off and on, and we got to the ER around 7:30. They got him right into X-ray, but then it took a while to get the results back. The ER doctor and the orthopedic on call said that both the tibia and fibula are broken. They put him in a temporary full-leg cast for now, and we are going to the orthopedic tomorrow to figure out what's next. As of right now, it looks like he is looking at 4-6 weeks in the full-leg cast, and then another 4-6 weeks in a walking cast.

Please pray for his healing, and also his emotional well-being. He is not in a good place right now. He is having a hard time processing everything and is also in a lot of pain. Also, please pray for the rest of us as we walk through this with him. Tim is still in bad shape, and there are some other major changes coming our way in the next few days unrelated to our health issues. And for me...since Andrew can't walk for the foreseeable future, he needs to be carried everywhere. At this point, Tim isn't able to do that so it rests on me. With My PICC, I'm technically not supposed to lift more than 10 lbs, but that was pretty unreasonable from the start. What mom of little kids can go without lifting for several months, right??? Because of that though, we're trying to see if we can somehow get a wheelchair for him to use when we have to go out for appointments. We are planning to try to get him into PT eventually to see if they can teach him how to use crutches, but he's not up for that right now.

Thank you all so much for all the love and support you've shown us as we walk through this difficult season in our lives. We appreciate it so much! ♥

Wednesday, March 20, 2013

Big Fat Disaster

That's what yesterday was. We showed up to the hospital for what was supposed to be a routine infusion, and within 10 minutes everything went haywire. Out of nowhere Tim went pale, he couldn't breathe, his heart rate and blood pressure were elevated, and he was shaking involuntarily. Suddenly the room was full of nurses. They stopped the medication drip and replaced it with saline, hooked him up to oxygen and did an emergency EKG.

Once they got him stable enough in the infusion center they sent him down to the ER to be monitored. The ER doctor talked to our Lyme specialist about his reaction so he is aware of what is going on. They monitored him for a while and then we eventually made it home with 10 minutes worth of a one hour infusion. We are so traumatized.

My sister was here watching the kids while we were at the hospital, and we had an impromptu sleep-over with her in case we needed to run back to the ER at any point through the night. Thankfully, the night was uneventful and Tim has been able to rest peacefully.  He is still feeling very tired and weak today from the ordeal.

We are trying to determine the best course of action with Tim's treatment and it is so frustrating. He is currently just on the Rocephin. We were so hopeful that the new medication might be our answer, but his body is just too fragile to handle it on top of the other IV medication.  The past few weeks have been really hard for him as his body tries to adjust to the new medication.  We are waiting to hear back from our doctor's nurse today to figure out the next step.

Tim has never been as physically fragile as he is right now. We have spent years getting our hopes up each time he starts a new treatment, each time he sees a new doctor, and each time he feels some improvement, as if each new doctor or medication is our savior. This is causing us even more to realize our need for our true Savior.  We are praying for his healing of course, but even more, we are praying that God will grant us contentment in whatever circumstances we find ourselves.

Monday, March 18, 2013

Month 1 on the PICC

Today marks a month since Tim got his PICC, so we wanted to give a quick update.  He has been through a lot in this last month, starting with a horrible experience getting the PICC put in.  Then we moved immediately on to a bad skin reaction that lasted a couple weeks, with a lot of nasty herxing thrown in the mix.  His skin reaction seems to have resolved, so we are very thankful for that.

He was doing well enough the other day to take a little walk down to the end of our relatively short driveway.  This is the same guy who used to run 5 miles after working a strenuous job on his feet all day and then play basketball and lift weights for the rest of the night.  Baby steps.  We're hoping to see that strong athletic guy back here again some day, but for now we will celebrate the victory of walking to the end of the driveway without spending the rest of the day in pain.

He woke up this past Saturday with some sort of pinched nerve in his neck/back and has been in severe pain with that.  It's too bad too, because he had some periods of relief from the Lyme symptoms during the same time.  Things could have been looking up a little if he could have moved his neck at all.  We got him into the chiropractor first thing this morning so we're looking forward to his neck being functional again soon.

We go in to the hospital tomorrow to get his first dose of the new medication he is adding.  He has been doing only Rocephin for the last month, and he will be adding in Doxycycline in addition to the Rocephin for the next month or two.  We are required to do the first dose of any new infusion medication in the hospital in case of any negative reaction.  We are expecting to see some more herxing with the addition of this new medication.  However, our doctor said that people often see good improvement of symptoms relatively quickly on this medication, so we are hopeful about that.  We are also hopeful that *if* spring ever comes to these parts, being able to get fresh air and sun will help not only our physical symptoms, but morale as well.