This is a post I NEVER wanted to write. It is something I NEVER want to relive but know it is quite possible I will experience it again.
I went to give Aaron his bottle around midnight. He was having a seizure. I held his hand and talked to him like I always do. He finally stopped and I turned around to get a diaper and wipes. The wipes container was empty so I filled it. When I turned around he looked funny. I picked him up and he was so cold and so stiff. My heart stopped. I started to shake. I took him in the hall and his mouth was blue and his face was turning purple. My baby was not breathing. I froze I shook him I did a sternal rub...nothing. He was still purple. I called for 911 to be called. I laid him on the floor I was shaking and he wasn't breathing. I did another sternal rub and he started to gasp for air. But his breathing is labored and irregular. Somehow I am on the phone talking and they are telling me not to do CPR it is all a blur I don't understand where is the ambulance who am I talking to my baby is still blue he is gasping for air and not responsive I need them to help him. I can't lose him where are they. It seemed like forever before they got there then they were there but he was still blue. They gave him oxygen until the paramedics arrived. Why is it taking so long I am giving his long and complicated history why are they not understanding diabetes insipidus why cant I remember all of his meds did I tell them all of his medical conditions so much commotion so many people so many questions. I can't think. Help my baby. He looks better but still blue. His breathing isn't as loud. We get in the ambulance and he has another seizure. They can't get the IV started they are both trying. He is having another seizure. They have tried his arm, back of his hand, wrist and both feet still no access. They are talking about an IO he needs meds. Finally he gets access on the underside of his wrist. He gets a dose of Ativan. His seizure stops but his heart rate is low and unstable. We are finally on our way to the hospital. We are going over his history again. They check his blood sugar it is 72..OK for Aaron. He has another seizure. He gets another dose of Ativan it stops and he goes to sleep. He is so cold but his color looks better. I can't help him. I can't make it better. All I can do is stare at the monitor and pray. He is talking to me I don't hear what he is saying I am watching the monitor I am praying. My stomach hurts I am going to be sick my head is pounding. He is talking to the hospital we are there. They rush him into room 3. There are so many people in there. So much talking, so much chaos but they all have jobs. This is all unreal. Questions and more questions. Meds, monitors, labs, He is crying I can't get to him I have to stay back I can't see the monitor how is he doing he stops crying and other people rush in. I hear abnormal heart rhythm they do a EKG. He gets more meds. People start to leave. They are still doing things to him. Finally they tell me I can come see him. I grab his hand and it is so cold. I kiss his head it is so cold. They bring him more warm blankets, his temp is coming up. His eyes are open I talk to him and he goes to sleep. He is OK. I can see the monitor his heart rate is up to 62 and his respirations are normal. They call Dr C and he admits him to peds. We finally get to the floor around 4:30 am. I am exhausted I am sick to my stomach and my head is throbbing. I just want to, need to hold my baby. We are settled. I pick him up and he melts into my arms. They check on him frequently I can see his monitor his heart rate is still coming up. Finally Dr W and Dr S (from Dr C's office) came and see him. They don't know why this happened. Neuro is called. Tests are read. Dr B (neuro from Dr O's office) comes to see us. The news is not good. She starts with I am sorry but...Again I do not hear anything. I just look at my sweet baby and finally start to cry. She is nice she waits she lets me get myself together and starts to explain what is wrong with my sweet angel. He has Lennox - Gastaut Syndrome. The prognosis is not good. Bleak is the word that was used. So our journey begins of finding some meds that will help get these seizures under control. No cure and very hard to control he has a very long road ahead of him. This syndrome causes brain damage so this is in addition to all that he is already dealing with. We are lucky. They helped my baby and he is OK. But this can happen again.
As I look back on that night I realize that what I thought was forever was actually only 4 1/2 minutes. They were there that quick. They were so gentle with him and I am so thankful for each of them. All 4 of the firefighters and the 2 paramedics. I will never be able to thank them enough for all they did that night for Aaron. There is more to write but I am emotionally exhausted. For now he is fine. We are lucky. We are blessed with more time with this amazing little boy.
God is good
No comments:
Post a Comment