Andrew has been followed by Neurology in the CICU for several days now. He wore an EEG for 48 hours with no abnormal brainwaves. They gave him the all clear to move to stepdown yesterday. Once in his room he stayed fairly aggitated like he had been for a while now. The previous 3 days were a nightmare. he had been having episodes where he would stare off and apnea spells. he would hold his breath for a good 5-7 seconds then start irratic breathing after each episode. He was rushed to CICU and monitored closely and they weren't seeing any episodes. I went in and stood over him the next day and noticed the breathing spells again, but no stare this time. I brought it to their attention and all doctors laid eyes on him and saw it and called the neurologists in.
Once they got in they could see the screen by his bedside and it wasn't showing any abnormal activity. They ruled out seizures and took him off the EEG and got him moved over after a swallow study.
I woke up this morning, 22nd, and his nurse was doing her usual assessment at shift change and I stood by his bed and she noticed he wasn't moving his right leg or arm at all. My heart dropped. :( I had a weird feeling all night and stood over his bed praying over him off and on all night. Now I really knew something wasn't right. He was kicking like crazy with the left leg and swinging that left arm, but nothing on the other side. The nurse kept picking up his leg and arm and they kept flopping right back down. I just wanted to cry, because my poor baby boy has been through enough, and at this point...we have too! I just want to take it all away from him. Breaks my momma heart. :(
He was rushed down to CT and they took his second scan in the past few days and this time a small clot showed up in the left side of his brain.
In morning rounds they dropped the dreaded word on me and it hit like a ton of bricks..."stroke". I'm thinking, hasn't he been through enough already?! Of course nothing an upset mind and momma could fix, so I have looked for positives in his day today. For instance, his face doesn't seem to be affected. He was slowly starting to make movements with his right arm, and I have never been more excited in my life to see my sweet baby's arm move. I literally cried!
He will now see neurology, hematology, physical, occupational, and speech therapies, cardiology, and transplant team here. Whew! We will have PT and OT 5 days a week and hopefully get his right side stronger again. Just another set back, but he has proven at what a fighter he is!
He was also officially listed on the transplant list (UNOS) yesterday, so the nerve racking count down is on.
Once they got in they could see the screen by his bedside and it wasn't showing any abnormal activity. They ruled out seizures and took him off the EEG and got him moved over after a swallow study.
I woke up this morning, 22nd, and his nurse was doing her usual assessment at shift change and I stood by his bed and she noticed he wasn't moving his right leg or arm at all. My heart dropped. :( I had a weird feeling all night and stood over his bed praying over him off and on all night. Now I really knew something wasn't right. He was kicking like crazy with the left leg and swinging that left arm, but nothing on the other side. The nurse kept picking up his leg and arm and they kept flopping right back down. I just wanted to cry, because my poor baby boy has been through enough, and at this point...we have too! I just want to take it all away from him. Breaks my momma heart. :(
He was rushed down to CT and they took his second scan in the past few days and this time a small clot showed up in the left side of his brain.
In morning rounds they dropped the dreaded word on me and it hit like a ton of bricks..."stroke". I'm thinking, hasn't he been through enough already?! Of course nothing an upset mind and momma could fix, so I have looked for positives in his day today. For instance, his face doesn't seem to be affected. He was slowly starting to make movements with his right arm, and I have never been more excited in my life to see my sweet baby's arm move. I literally cried!
He will now see neurology, hematology, physical, occupational, and speech therapies, cardiology, and transplant team here. Whew! We will have PT and OT 5 days a week and hopefully get his right side stronger again. Just another set back, but he has proven at what a fighter he is!
He was also officially listed on the transplant list (UNOS) yesterday, so the nerve racking count down is on.