As mentioned in my last post we went to the Pulmonologist on Friday January 6th, at that time he agreed to take Luke off the huge dose of Bactrim he was on and then suggested we start Cipro on Monday. We were hoping that once we took Luke off the Bactrim that the high heart rate he was dealing with and the jerking that he started while on that med would go away. But no he was still dealing with the constant jerking. That Dr. assured me that the jerking didn't look like seizures to him, he said that it was looking like someone jerking as they were falling sleep, I thought that was a reasonable explanation since it stopped when he went to sleep.
On Monday I thought perhaps a steroid would help Luke, knowing in the past it has helped him get over some pretty nasty respiratory bugs before. So I went down to the pharmacy to pick up his Cipro and waited two hours for the Dr. to put in an script for Predilisone. That night we began those two medications along with the current ones he was taking his Atrovent and Flovent puffers and antibiotic TOBI nebulizer treatment. That night was actually pretty good, one of the best we have had recently.
Tuesday Luke seemed to be doing a bit better, but he was still jerking constantly and still on constant oxygen, but seemed a little better. I actually felt ok about leaving him with Amy for awhile. I went up to meet my good friend Jean for lunch. Jean is my friend who lost her daughter Annie last March, we have a lot in common in the fact that we both had 7 children, both had children who have suffered an anoxic brain injury. I was blessed by her encouraging words, knowing that God has carried her through the pain and grief of losing her daughter last year and yet she still takes the time to meet and assure me that she prays for Luke and our family on a daily basis. After meeting her for lunch I went to a homeschool used book store and spent an hour there picking out some new grammar books for the kids. Thankfully my mom has decided to start tutoring the boys in grammar, what a HUGE relief that is for me!
Tuesday night wasn't so good, back to lots of secretions, suctioning and alarming, I was up all night again. Wednesday morning I was thankful for the fact that my sister Cindy came over to get Luke up and ready for the day so that I could get a few hours of sleep. I was in constant uneasiness about Luke and the fact that he continued to jerk all the time. That afternoon I decided to call a few of Lily's friends to see if they could come over on Thursday for a fun very belated girl birthday party, thankfully they were able to fit that into thier schedules.
Wednesday night was a little better and I was able to get to bed by 1 am the earliest that I can remember going to bed in over two weeks. When I woke up Thursday I should of felt more refreshed but no I was still exhausted, but I knew that I needed to get up to get the house ready for Lily's friends. That day I was in a quandry to know what to do, I was so stressed by the fact that Luke still was jerking constantly and now seemed to be puffy and in pain, heart rate was soaring and a new problem of him being constipated, this was a first for Luke as he is usually very regular in that area of his life. I e-mailed his Dr. explaining all those things and he called me back a few hours later telling me that he thought I needed to take Luke into the ER. I asked him if I could wait until after Lily's birthday party and he said that would be ok. Lily had so much fun playing dress up and putting on makeup, playing with dollies and running around outside. I took them to Chuck E Chesses that night her first time there for a birthday party. Though I was feeling stressed knowing that I was needing to get Luke to the ER.
I took Luke into the ER around 8 pm and he was almost immediately taken back to one of the rooms there, even though they were packed that night. The first Dr. that came in immediately freaked out saying that Luke's jerking was seizures he was not very happy when he found out that he'd been doing that for a few weeks. He brought back the Head Dr. and they almost immediately put in an IV to give him some medication to get his jerking to stop. I was still not sure that Luke was seizing in the fact the jerking would stop when he relaxed or slept. Long story longer they were going to admit him in the hospital that night but I said that I was perfectly comfortable with taking him home with the new medications that they gave us for him. After taking his blood work, x-raying his lungs and checking his urine, which all turned out to show no new infections, Praise God, they let us leave around 3 am that morning. I climbed into bed about 4:30 absolutely exhausted.
Luke slept most of the day on Friday and actually seemed to be doing better the jerking had stopped most of the day, but that night was a nightmare one of the worst nights ever. We are not sure if or what new medication was causing his horrible breathing and problems that night. I ended up having to hold him all night just so he could breath ok. I sat all through out that night wondering if I should take him back to the hospital. I finally climbed into bed at 7 am and both he and I slept most of Saturday. That is when Gordy and I decided that we need to figure out what is causing these breathing problems, so we've decided to start cutting medications until we figure out which one is causing the problems. A balancing act that is dangerous but needed, because we are desperate for answers.
I would say one of the most frustrating part of this whole week is the fact that Luke doesn't have one Dr. who would really knows how to determine what medication is causing the most problems. Medications always have pages of horrible side effects and more pages of what not to mix with what and I wonder who is making sure we are mixing two medications that is causing the problems. Bottom line we need prayer, prayer for wisdom, prayer for the jerking to stop forever, prayers for the need for constant oxygen to go away, prayers for wisdom, prayers his heart rate to stay down to a healthy level, prayers for a miraculous healing!!
Thank you for your prayers,
Luke's Mommy Sue
PS Once again I realize this is a really, really, really long post but please keep in mind this my journal of Luke's journey, one that I want to keep up to date, one that I choose to make public, one that I hope continues to bring prayers our way and one that I hope you enjoy reading.