The Air Team arrives. There are four of them-a pilot, an attending and two residents. Just guessing, of course. Still not sure I have done the right thing, one of the residents takes one look at Dear Son and turns white. He comments on how hard he is breathing and administers an oxgen face mask immediately. They also require that one of his antibiotics be changed prior to transport. I am relieved already and begin to relax. This is Dear Son’s fourth air transfer and I know how good this team is. I am always impressed with the way they take over immediately and manage the crisis. I breathe a sigh of relief. This is the stuff the commercials should be made of. Skip the best hospitals stuff-this is when it “really” matters. I can’t begin to tell you what a sense of relief that comes over me when they arrive. It’s the same feeling I get when Dear Son’s in deep trouble and Ped Neuro Doc takes over. These people are good. No, these people are great at what they do.
I leave the hospital to meet them there. I don’t have enough gas to get me downtown so I’ll have to stop or I won’t make it. I leave the hospital and am driving towards the highway when I look up and see the helicopter overhead. This is totally weird. It’s like the scene in a movie, the kind that never happen in real life, but they put it in there to demonstrate the emergency. I can’t believe it’s Dear Son in that helicopter. I feel like I’ve just dodged a bullet. I pull into the gas station, pay cash for my gas and grab a bag of chips while I am there. I get peeved at myself and tell myself that this is nothing more than emotional eating and that I need to put the chips back. I’ve worked too hard to blow it on a bag of chips. I decide that there will be other days to work on this issue and buy the chips anyways. I don’t even like chips. Go figure.
I arrive at the Pediatric Intensive Care Unit (PICU). It’s now 8 o’clock p.m. There are some twenty people working on Dear Son. They have done more in the last hour than the previous hospital did in three days. I still don’t know what’s wrong but I do know this. More people, bigger problem. I’ve seen it one too many times before. I stay in the background offering information only as needed, letting them do their job. They have him hooked up to the Bi-PAP machine, I believe. I don’t really know what a Bi-PAP machine is, however they have it at 100%. They continue to work on him throughout the night. I am getting worried now.
It’s Saturday morning and the furor continues. He’s got IV’s in both feet, a central line in his hip, a catheter, his g tube, an arterial line in his left wrist, monitors on his right hand, an NG tube and they just vented him at 100%. The syringe pumps are stacked so high it looks like a condo tower. I have never seen that many before. It’s not even noon. They work their tails off until 5 p.m. I thank one of the day nurses at she leaves to go home at the end of her shift. I tell her that she did a great job today and thank her for working so hard. She appreciates the fact that I noticed, but she is downright exhausted. They have been working hard since 8 p.m. last night. I look at Dear Son and he’s motionless in bed. They have given him paralyzing medicine to keep him still. I wonder if I have done the right thing. Ironically, I think back to Neonatal’s Docs post earlier this year where we discussed putting plans in place for times like these. I wonder if my decision or lack thereof, is the right one for Dear Son. Am I keeping him alive because I selfishly love him and want him to be around and by the same token prolonging his suffering? I decide I can’t think clearly right now and look at Dear Son and want to kiss his cheek and see his beautiful smile again. I start praying some more that I see it again. I can’t stand looking at him like this.
They approach me again and tell me Dear Son needs a blood transfusion. I am exhausted and overwhelmed and deny their request. I am feeling uncomfortable again. I just need to see a familiar face to ask them about these transfusions. Are they safe? I picture myself forever checking off the box that he’s had a blood transfusion and wonder if it’s really necessary. I try calling our Pediatrician but can’t get in touch with him. Ped Neuro Doc is still on vacation and Ped Neuro Nurse won’t answer her page. I just want to see someone I know. I decide to leave a voice mail message on Ped Neuro Doc’s home phone. I know he’s on vacation but it’s the least I can do.
The nurses come in to suction Dear Son often. I can’t bear to listen to this or watch this. I have to leave the room. I suck at medical stuff-I am much better at the business end of healthcare, meeting with healthcare CEO’s, CIO’s than this stuff. Actually, this stuff makes me nauseous. I ask them to be careful to keep Dear Son on his sides since he can’t roll over and he chokes on his saliva normally. The PICU nurses are great here-smart and hardworking.
I look over at Dear Son again. My mind wanders back to last summer. Ever since Ped Neuro Doc told me he was dying, my life with him has never been the same. I am always wanting one more day, one more smile and one more day to love him. Today’s no different.
Continued... The MRSA Pneumonia: Part III-A Mother's Day to Remember
I leave the hospital to meet them there. I don’t have enough gas to get me downtown so I’ll have to stop or I won’t make it. I leave the hospital and am driving towards the highway when I look up and see the helicopter overhead. This is totally weird. It’s like the scene in a movie, the kind that never happen in real life, but they put it in there to demonstrate the emergency. I can’t believe it’s Dear Son in that helicopter. I feel like I’ve just dodged a bullet. I pull into the gas station, pay cash for my gas and grab a bag of chips while I am there. I get peeved at myself and tell myself that this is nothing more than emotional eating and that I need to put the chips back. I’ve worked too hard to blow it on a bag of chips. I decide that there will be other days to work on this issue and buy the chips anyways. I don’t even like chips. Go figure.
I arrive at the Pediatric Intensive Care Unit (PICU). It’s now 8 o’clock p.m. There are some twenty people working on Dear Son. They have done more in the last hour than the previous hospital did in three days. I still don’t know what’s wrong but I do know this. More people, bigger problem. I’ve seen it one too many times before. I stay in the background offering information only as needed, letting them do their job. They have him hooked up to the Bi-PAP machine, I believe. I don’t really know what a Bi-PAP machine is, however they have it at 100%. They continue to work on him throughout the night. I am getting worried now.
It’s Saturday morning and the furor continues. He’s got IV’s in both feet, a central line in his hip, a catheter, his g tube, an arterial line in his left wrist, monitors on his right hand, an NG tube and they just vented him at 100%. The syringe pumps are stacked so high it looks like a condo tower. I have never seen that many before. It’s not even noon. They work their tails off until 5 p.m. I thank one of the day nurses at she leaves to go home at the end of her shift. I tell her that she did a great job today and thank her for working so hard. She appreciates the fact that I noticed, but she is downright exhausted. They have been working hard since 8 p.m. last night. I look at Dear Son and he’s motionless in bed. They have given him paralyzing medicine to keep him still. I wonder if I have done the right thing. Ironically, I think back to Neonatal’s Docs post earlier this year where we discussed putting plans in place for times like these. I wonder if my decision or lack thereof, is the right one for Dear Son. Am I keeping him alive because I selfishly love him and want him to be around and by the same token prolonging his suffering? I decide I can’t think clearly right now and look at Dear Son and want to kiss his cheek and see his beautiful smile again. I start praying some more that I see it again. I can’t stand looking at him like this.
They approach me again and tell me Dear Son needs a blood transfusion. I am exhausted and overwhelmed and deny their request. I am feeling uncomfortable again. I just need to see a familiar face to ask them about these transfusions. Are they safe? I picture myself forever checking off the box that he’s had a blood transfusion and wonder if it’s really necessary. I try calling our Pediatrician but can’t get in touch with him. Ped Neuro Doc is still on vacation and Ped Neuro Nurse won’t answer her page. I just want to see someone I know. I decide to leave a voice mail message on Ped Neuro Doc’s home phone. I know he’s on vacation but it’s the least I can do.
The nurses come in to suction Dear Son often. I can’t bear to listen to this or watch this. I have to leave the room. I suck at medical stuff-I am much better at the business end of healthcare, meeting with healthcare CEO’s, CIO’s than this stuff. Actually, this stuff makes me nauseous. I ask them to be careful to keep Dear Son on his sides since he can’t roll over and he chokes on his saliva normally. The PICU nurses are great here-smart and hardworking.
I look over at Dear Son again. My mind wanders back to last summer. Ever since Ped Neuro Doc told me he was dying, my life with him has never been the same. I am always wanting one more day, one more smile and one more day to love him. Today’s no different.
Continued... The MRSA Pneumonia: Part III-A Mother's Day to Remember
4 comments:
Your writing is.... amazing, Dream Mom.
I'm so glad that Dear Son has you; it's beginning to be very very obvious why he's so well usually - he has a fantastic mum!
Now, BiPAP is basically a machine that is hooked up to the person's airway - often their nose - and every time they try to take a breath it helps them take a bigger breath. It's not breathing for them like a ventilator does, but it's supplementing if the person is not taking deep enough breaths on their own. A lot of kids with spinal muscular atrophy or muscular dystrophy use it regularly. Just thought you'd like to know :)
Rescue-PartI-was were you put the wheels in motion to save Dear Son's life. Rescue-Part II was were everyone came on board with you. Thank God! No one knows a child like his mother-especially a child who has special needs like your son. You know what looks right and what doesn't-good for you that you took the action you did when you did.
You know what? I don't have any words of wisdom but you are using your brain to listen to your heart, and what more can you do, mom?
Just sending a little prayer your way across the internet. We're all thinking about you and your Dear Son.
Dream Mom, if all special needs kids were blessed with a mom like you, it woudl be a great world. I think about you and dear son all the time now. First thing every morning I check your blog. I hope you know how many people care about the two of you.
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