SeamusMalcolm
08-15-2005, 10:14 PM
Hi All,
I know it's been awhile since I've written, but it's been crazy since the start of school last Wednesday. Malcolm did great last week and had a good pediatrician appointment on Friday. I told the ped that we were still waiting on getting an order for the equipment company for a more humidified way of delivering him Os. Well, that night his sats started wavering, never mind that the stupid pulse-ox lead wasn't working most of the time so I couldn't get a good read anyhow. I slept on the floor with him next to me most of the night so I could feel his breaths. By then I had turned off the monitor because the leads weren't working. By the AM I could feel that he had to work harder to get his breaths. His shoulders were heaving a bit. I couldn't wait for the nurse to get there.
When she did, she agreed he was working too hard and she went right at giving him breathing treatments and suctioning him multiple times and turning up the Os. We worked at this a couple of hours, but the pulse-ox lead was still being silly. When it seemed to be working, it was too low for him 85 - 90% and erratic. We decided to call doctors - the pediatrician and the PICU. The PICU said they could take him, but in order to be transported up there we had to go to the ER here first. So that's what we did, because we didn't hear from the ped in time. We didn't feel comfortable taking him ourselves on the hour and a half trip to Savannah.
We spent all day in the ER. He got a breathing treatment, a chest x=ray, and bloodwork and seemed to improve as soon as we got him on their oxygen. He had started to improve in the car on the bottled (as soon as we turned down the road to the hospital, of course). His ped, Dr. Amy, came by and consulted with the ER doctor (who happened to be the same guy who treated me when I had a miscarriage 2 years ago). They called the PICU, who agreed to send the transport team down to get him. Sending him home was too risky, and I was NOT going to stay in that hospital, which doesn't even have a picu. Nor did I feel comfortable taking him home since the equipment seemed to be the culprit.
It seemed to take forever for the transport team, Angel One, to get there. But hospital time is different than real time. I actually called my inside contacts at the NICU (that's where Angel One is based) to find out if they had left yet! I told the secretary to let his old nurses in the NICU know he was coming up for a visit. I know most of the nurses and RTs on the transport team so I wondering who would show up at our door. By the time they left, it only took them an hour. Boy they get to haul patootie. Past our door walks Lisa, one of our RTs we know well! It was almost like homecoming!
The Angel Team brought their transport isolette, which Malcolm barely fit into! Can you believe it?! He's too big for something! The Angel team got Malcolm hooked up on their oxygen and squeezed him into the isolette. It was a tight squeeze! I kissed his hand and said good bye.
I met them up at Memorial in Savannah a couple of hours later - I needed clothes, gas, and food. He was doing well up there. The doctors, nurses, and RTs agreed that he needed heated humidity. The bubbler on the concentrator (converts room air to close to pure O2) is not enough. Besides, he needs a flow of mist, which also helps move the CO2 away. They were a bit appalled that equipment company RT would have such a jury-rigged set up.
So I'm a bit peeved at the situation now. It seems the RT should've known better. I don't know why they didn't try to set up the system with the compressor/heated humidity again OR get other equipment in with what was working to give him what he needed. Basically, the lack of heated humidity and air flow (the compressor's job) made his secretions more and more thick until they blocked up his Os and made him desat. Seeing that tinge of blue around his lips and extremities in the am was scary.
He's still in the hospital (same place - PICU 4) and close to his baseline respiratory status. He a suck/swallow/breathe evaluation from the OTs today in order to evaluate whether he could handle doing a modified barium swallow tomorrow. He hasn't taken a bottle or pacifier (spits it out) in so long he didn't know quite what to do but gag. Finally, he got the hang of it again, after realizing there were num-nums in the bottle. He is still learning (amazing they can "un-learn" or never have the suck-swallow-breathe thing down), but they think he can get enough barium down that they can get a picture or two so we can see if he's aspirating or not. It is too dangerous for him to eat by mouth if he's still aspirating.
Again, cheers and thanks for everyone who's been checking in!
I know it's been awhile since I've written, but it's been crazy since the start of school last Wednesday. Malcolm did great last week and had a good pediatrician appointment on Friday. I told the ped that we were still waiting on getting an order for the equipment company for a more humidified way of delivering him Os. Well, that night his sats started wavering, never mind that the stupid pulse-ox lead wasn't working most of the time so I couldn't get a good read anyhow. I slept on the floor with him next to me most of the night so I could feel his breaths. By then I had turned off the monitor because the leads weren't working. By the AM I could feel that he had to work harder to get his breaths. His shoulders were heaving a bit. I couldn't wait for the nurse to get there.
When she did, she agreed he was working too hard and she went right at giving him breathing treatments and suctioning him multiple times and turning up the Os. We worked at this a couple of hours, but the pulse-ox lead was still being silly. When it seemed to be working, it was too low for him 85 - 90% and erratic. We decided to call doctors - the pediatrician and the PICU. The PICU said they could take him, but in order to be transported up there we had to go to the ER here first. So that's what we did, because we didn't hear from the ped in time. We didn't feel comfortable taking him ourselves on the hour and a half trip to Savannah.
We spent all day in the ER. He got a breathing treatment, a chest x=ray, and bloodwork and seemed to improve as soon as we got him on their oxygen. He had started to improve in the car on the bottled (as soon as we turned down the road to the hospital, of course). His ped, Dr. Amy, came by and consulted with the ER doctor (who happened to be the same guy who treated me when I had a miscarriage 2 years ago). They called the PICU, who agreed to send the transport team down to get him. Sending him home was too risky, and I was NOT going to stay in that hospital, which doesn't even have a picu. Nor did I feel comfortable taking him home since the equipment seemed to be the culprit.
It seemed to take forever for the transport team, Angel One, to get there. But hospital time is different than real time. I actually called my inside contacts at the NICU (that's where Angel One is based) to find out if they had left yet! I told the secretary to let his old nurses in the NICU know he was coming up for a visit. I know most of the nurses and RTs on the transport team so I wondering who would show up at our door. By the time they left, it only took them an hour. Boy they get to haul patootie. Past our door walks Lisa, one of our RTs we know well! It was almost like homecoming!
The Angel Team brought their transport isolette, which Malcolm barely fit into! Can you believe it?! He's too big for something! The Angel team got Malcolm hooked up on their oxygen and squeezed him into the isolette. It was a tight squeeze! I kissed his hand and said good bye.
I met them up at Memorial in Savannah a couple of hours later - I needed clothes, gas, and food. He was doing well up there. The doctors, nurses, and RTs agreed that he needed heated humidity. The bubbler on the concentrator (converts room air to close to pure O2) is not enough. Besides, he needs a flow of mist, which also helps move the CO2 away. They were a bit appalled that equipment company RT would have such a jury-rigged set up.
So I'm a bit peeved at the situation now. It seems the RT should've known better. I don't know why they didn't try to set up the system with the compressor/heated humidity again OR get other equipment in with what was working to give him what he needed. Basically, the lack of heated humidity and air flow (the compressor's job) made his secretions more and more thick until they blocked up his Os and made him desat. Seeing that tinge of blue around his lips and extremities in the am was scary.
He's still in the hospital (same place - PICU 4) and close to his baseline respiratory status. He a suck/swallow/breathe evaluation from the OTs today in order to evaluate whether he could handle doing a modified barium swallow tomorrow. He hasn't taken a bottle or pacifier (spits it out) in so long he didn't know quite what to do but gag. Finally, he got the hang of it again, after realizing there were num-nums in the bottle. He is still learning (amazing they can "un-learn" or never have the suck-swallow-breathe thing down), but they think he can get enough barium down that they can get a picture or two so we can see if he's aspirating or not. It is too dangerous for him to eat by mouth if he's still aspirating.
Again, cheers and thanks for everyone who's been checking in!