So I am typing this from the iPad. Please forgive the typos. Yesterday was another speedbump in our little journey. Even with the VNS (vagal nerve stimulator) on board, David had a major seizure. He was fine and then he wasn't. We were watching tv when it began. It was the third major seizure since
Jan. 21, 2008. It is lucky that my older children seem to have a cool head when I am freaking out and falling apart. Thankfully Z was able to call 911 while I was trying to stop the seizure.....first with Diastat (because I forgot he had the VNS) and then with the VNS magnet. By the time EMS arrived, the seizure had just stopped and David was was limp and exhausted. Time had both stopped and become distorted for me. I knew he was "just" having a seizure but my mind was wildly trying to
figure out "why?" I had no choice but to panic. It's in my DNA. I also had no idea the seizure lasted
8.5 minutes. Thank God Z was there!
As we road to the hospital via ambulance, I know I carried on a lengthy conversation with the driver. What it was about I could not tell you. My focus was on my non moving child and the seizure he just had. As they worked on him in the ER, I was encouraged to see him open his eyes and respond as after his last major seizure it was some 30 hours before he came out of his post seizure fog. My encouraged attitude took a nose dive as David's blood pressure headed south. He was rocking a 102 degree fever....the culprit of his seizure onset and he was very quiet.
Let me say here that the ER nurses were amazing. One in particular I credit for saving his life as she refused to allow the doctor to put off starting his antibiotic. The doctor that was second in command left much to be desired. As David's BP plummeted, the doctor seemed almost cavalier. He said we "might" be looking at an infection. When I asked how low he was going to allow David's BP to drop, he said that he was not a numbers guy. When I asked how long he would let it remain at 61/31, he said he didn't like to put a timetable on things. When I asked what our options were for bringing it up he said there were many starting with large quantaties of IV fluids. Since we were an hour into fluids with no results I was a little curious about our alternatives. They already had him full of fluids and had his bed reclined with his head almost touching the floor. Still the numbers dropped. I was ready to start using my outside voice on a certain doctor! The kicker was when a nurse came in saying that he was going to PICU and that they needed to start a second IV. I asked her what they thought was going on and she said "He's septic! He's critical and that's why he's going to the PICU!" I must have shown the shock I felt as she then questioned whether the doctor had talked to me or not. When I said NO......then she looked shocked and went in search of the ass....errrr.......doctor. He refused to come back in the room. That's okay......I could go to him! Let us just say that when I was finished.....he and I weren't friends anymore!
As I said....thank God for the nurses and especially the one who refused to wait on the antibiotics! Slowly he started to rally. The first sign was on our trip down the hall to nuclear medicine for his shuntagram. He saw a pretty nurse and began saying..."hi!" and then gave a hall echoing "yee haw." I knew he still was far from out of the woods though as he lay very still and very quiet during his procedure......something that would never have happened had he been feeling well.
After the test we were taken to PICU, settled in and then began our wait for test results. David tried his hardest to sleep but it wasn't in the cards. There was too much probing and prodding and people in and out of the room for him to be able to relax. Dr. Shah, his neurologist came in about 1 a.m. and let me know he was not concerned about another seizure but he was going to get to the bottom of what caused his temperature to spike. All we knew for sure at the time was that he did not have a shunt malfunction. More waiting.
Throughout the night as the antibiotics did their thing, his BP rose and became normal. His vitals evened out and he went from critical to good. This morning we found that his throat is red and full of puss pockets. We could be dealing with strep. We are waiting on the cultures. We were told that he would remain in PICU until at least this evening and then move to the peds floor. We will not be
leaving until all blood and urine cultures are back....so we will be here until at least Monday. Luckily we have a private ICU room....a coveted commodity and David is feeling well enough to watch Spongebob the Movie and periodically clap so hard that he sets off his alarms. I would say we are trending up!
Throughout this, I am once again humbled at how blessed we are to have so many wonderful people in our lives. The thoughts, prayers, messages and visits have been amazing and for someone used to doing it alone.....it makes it a lot less lonely.
Jan. 21, 2008. It is lucky that my older children seem to have a cool head when I am freaking out and falling apart. Thankfully Z was able to call 911 while I was trying to stop the seizure.....first with Diastat (because I forgot he had the VNS) and then with the VNS magnet. By the time EMS arrived, the seizure had just stopped and David was was limp and exhausted. Time had both stopped and become distorted for me. I knew he was "just" having a seizure but my mind was wildly trying to
figure out "why?" I had no choice but to panic. It's in my DNA. I also had no idea the seizure lasted
8.5 minutes. Thank God Z was there!
As we road to the hospital via ambulance, I know I carried on a lengthy conversation with the driver. What it was about I could not tell you. My focus was on my non moving child and the seizure he just had. As they worked on him in the ER, I was encouraged to see him open his eyes and respond as after his last major seizure it was some 30 hours before he came out of his post seizure fog. My encouraged attitude took a nose dive as David's blood pressure headed south. He was rocking a 102 degree fever....the culprit of his seizure onset and he was very quiet.
Let me say here that the ER nurses were amazing. One in particular I credit for saving his life as she refused to allow the doctor to put off starting his antibiotic. The doctor that was second in command left much to be desired. As David's BP plummeted, the doctor seemed almost cavalier. He said we "might" be looking at an infection. When I asked how low he was going to allow David's BP to drop, he said that he was not a numbers guy. When I asked how long he would let it remain at 61/31, he said he didn't like to put a timetable on things. When I asked what our options were for bringing it up he said there were many starting with large quantaties of IV fluids. Since we were an hour into fluids with no results I was a little curious about our alternatives. They already had him full of fluids and had his bed reclined with his head almost touching the floor. Still the numbers dropped. I was ready to start using my outside voice on a certain doctor! The kicker was when a nurse came in saying that he was going to PICU and that they needed to start a second IV. I asked her what they thought was going on and she said "He's septic! He's critical and that's why he's going to the PICU!" I must have shown the shock I felt as she then questioned whether the doctor had talked to me or not. When I said NO......then she looked shocked and went in search of the ass....errrr.......doctor. He refused to come back in the room. That's okay......I could go to him! Let us just say that when I was finished.....he and I weren't friends anymore!
As I said....thank God for the nurses and especially the one who refused to wait on the antibiotics! Slowly he started to rally. The first sign was on our trip down the hall to nuclear medicine for his shuntagram. He saw a pretty nurse and began saying..."hi!" and then gave a hall echoing "yee haw." I knew he still was far from out of the woods though as he lay very still and very quiet during his procedure......something that would never have happened had he been feeling well.
After the test we were taken to PICU, settled in and then began our wait for test results. David tried his hardest to sleep but it wasn't in the cards. There was too much probing and prodding and people in and out of the room for him to be able to relax. Dr. Shah, his neurologist came in about 1 a.m. and let me know he was not concerned about another seizure but he was going to get to the bottom of what caused his temperature to spike. All we knew for sure at the time was that he did not have a shunt malfunction. More waiting.
Throughout the night as the antibiotics did their thing, his BP rose and became normal. His vitals evened out and he went from critical to good. This morning we found that his throat is red and full of puss pockets. We could be dealing with strep. We are waiting on the cultures. We were told that he would remain in PICU until at least this evening and then move to the peds floor. We will not be
leaving until all blood and urine cultures are back....so we will be here until at least Monday. Luckily we have a private ICU room....a coveted commodity and David is feeling well enough to watch Spongebob the Movie and periodically clap so hard that he sets off his alarms. I would say we are trending up!
Throughout this, I am once again humbled at how blessed we are to have so many wonderful people in our lives. The thoughts, prayers, messages and visits have been amazing and for someone used to doing it alone.....it makes it a lot less lonely.
All I can say is, "Thank God for his grace. And thank God for the fight in David's mom." Without the outcome would be very different right.
ReplyDeleteAnd I will continue to pray for healing, strength and peace for both David, his mom and Z. Bless you all.
I have to agree with Anonymous ^^^^^. Davids strength comes from the strength he sees from his mother. Without her strength and fight the outcome would be so very different. You have shown amazing strength to both David and Zach and they now are strong young men for that fact.
ReplyDeleteSending prayers for all of you!