Sunday, April 15, 2012

Our Little Logan: Back in the hospital

Again, in an effort to have a record of Logan's health struggles and to provide more detailed information for those who are interested, here is a recap of where we've been since my last blog post...
A rare, but very welcome smile from our sweet boy, who has very little to smile about. He is such a trooper!

Monday, March 26 - After 18 days in the hospital, we were released from the hospital and headed to the Children's Center in Bethany for inpatient therapy. Logan’s last week in the hospital was spent out of ICU, in a regular room, where we worked on getting him back on as normal a routine as possible – eating, drinking, taking meds by mouth and sleeping through the night. We had to fight quite a bit of agitation as he came off of so many drugs, but he did beautifully – all things considered.

Our week in therapy started off a little rough. Logan was very sleepy and uninterested in participating in his therapy sessions. As the week went on, we saw progress each day. He was taking two naps a day, sleeping through the night and eating like a champ. He made great strides in therapy as well. There was no therapy on Saturday afternoon or Sunday, so we got to take him home during the day to be all together again, and to give us a test-run of what life would look like. By Sunday evening, we were convinced he was ready to come home.
Monday, April 3 - We got to bring Logan home! He still had a way to go to get back to where he was developmentally. He was sitting up on his own really well; using both arms and hands to play; had started to bear weight through his arms to push up and roll over; and would tolerate standing assisted for a minute or two. We were very encouraged by his progress and were so thankful to see some of his personality coming back as well. After three and a half weeks of juggling two kids in two places, Jeff and I were completely exhausted. So we were thrilled to be under one roof again!
Without the tremendous support from our families and friends bringing meals, keeping Griffin, sitting with Logan and countless other acts of love, we would not have made it through that episode; and we are eternally grateful! Our week at home went very well. Logan seemed to be better each day, and we were feeling like we could actually handle what we were facing.
Then the other shoe dropped on Friday, April 6 around 8 am. We had finished breakfast with both boys, and I noticed Logan’s left side twitching again. We called our neurologist’s office and paged the doctor, but 15 minutes later, the seizing had intensified and we were sure it was the same thing we had seen exactly four weeks earlier. We loaded him into the car and headed for the Integris campus. We ended up in our neurologist’s waiting room right as the office was opening, and they were so wonderful and helpful (even though we had clearly violated the code of conduct for doctor’s offices). They sent us back to the ER to get medication to try to stop the seizures. After several drugs failed to do the job, we were admitted to PICU again to continue meds to get the seizing under control. We were greeted by the doctors and nurses with open arms, and were relieved to see familiar faces who know us well.
Saturday, April 7 - Thankfully, they were able to get Logan’s seizing under control overnight without having to completely sedate him. They did an MRI in the morning, and preliminary results didn't show much difference from the two he had during our last stay. Discouraged by what they were seeing, the doctors ordered lots of labs to test for a number of disorders that might be the cause. By this point, we were getting the message that we were back to the drawing board when it came to determining the cause of the seizures.
Monday, April 9 - The neurologist confirmed that their original diagnosis of ADEM (acute disseminated encephelomyelitis) was likely not the cause of his seizures after all. Based on the MRI showing little change and his liver enzymes remaining in the abnormal range (which has been the case since we first came to the hospital), their next step was to send off tests for genetic mutations that could be the explanation for his illness. We had heard that many of these tests could take up to six weeks to get results, but they were isolating some specific tests to be run first so we were hopeful for more like a two week turnaround. We are purposefully not going to mention any specifics here, to prevent the Google frenzy that would inevitably ensue!
The rest of the week was relatively uneventful. Logan didn't have much, if any, interest in eating or drinking. So they put in a feeding tube to ensure he didn't get set back even further by not getting proper nourishment. Since the seizures had been under control for a week, they also slowly lowered his Versed drip, which keeps him pretty sleepy and out of it. By Friday, April 13, they were comfortable turning off the Versed completely to see if we could get him a little more alert. As he did so, he continually got more and more uncomfortable and agitated, and Jeff and I worried that something wasn't right. We also found out on Friday that the test results we're waiting for will take four weeks, at a minimum. Needless to say, Friday was a frustrating day.

We ended up putting him back on the Versed and constant EEG monitoring on Friday evening. As of today (Sunday), the EEG has shown no seizure activity. Big praise! The plan for now is to come off the Versed even more slowly, and they began reducing that concentration this morning. Our prayer is that the agitation and irritability will be minimal, and he will be comfortable and pain free. If we can get him off the Versed so he's more alert and eating and drinking better, they want to monitor him here for at least 4-5 days. The goal is to go home with the seizures managed on medications that won't make his liver worse, and await test results, so we know how to proceed.

As you can imagine, the waiting is the most difficult part of this process, so we continually pray for patience. We are doing our best to stay focused on the little goals and milestones he needs to achieve, and not dwell on the fear of the future. These are easy things to say, but not at all easy to accomplish. Each moment presents new worries, fears and anxiety about what we might be facing, and while I can't speak for Jeff, fighting off these thoughts has been very difficult for me.

Again, huge thanks to every one of you for your relentless prayers, words of encouragement, cards, notes, meals and love. We are so very thankful for you!