Greg’s mom called to say there’s really been no change today. More as I get it.
For those of you wishing to send cards, please send them to his parent’s house at 194 Kenyon Street, Hartford, CT, 06105. I’m guessing he’s not allowed any non-family visitors at this point, but will ask the next time I speak to them.
Sorry I don’t have more news.
i touched base with eleanor today and they are remaining positive, while trying to stay realistic. greg has been having a rough time but has been holding his own and the family and doctors are happy about that.
the big challenge has been getting his heart into a good sustainable rhythm. they’re using cardioversion techniques, including shocking his heart, to get his heart into a normal pattern. the ventricular specialist says that the right side of his heart has enlarged and is causing this to be not as succesful as they had hoped.
he’s still on the ECMO to facilitate blood oxygenation, but they’re working to reduce his use of it since prolonged use is not ideal. today they did an echocardiogram and reduced some of his meds successfully, but didin’t keep the ECMO machine notched down for long since they want to make sure his heart can handle it. even with the ECMO, he’s only able to use his lungs to about 30% of their capacity, so they need to get that up.
they are becoming concerned about neurlogical issues, but need to really assess greg when he’s not as medicated. he can sometimes follow simple requests, but sometimes is not aware of reality.
he’s been stable enough today that they’ve planned a trip back to CT to take care of some odds and ends and will continue to take shifts at the hospital.
greg’s big goal is to get off the ECMO and get his lungs working at a higher capacity so that that they can concentrate on normalizing his heart rhythm without the cardioversion. focus your postive energy and prayers to this goal. the more positive energy people can send the better. do it how ever it works for you… light a candle, say a prayer, take some photos you have of greg and put them somewhere where you can smile at him every day/hour to send your love for him his way.
stay strong greg. you can do it.
Hi all,
Sorry for the silent weekend. I know that can be frustrating. We heard from Eleanor last night via phone message letting us know he is still stable and they’re having a family meeting today to discuss next steps. I will keep you posted as soon as we are updated.
Greggles, many many healers and I sent you SO much energy this weekend while I was away. Stay open to the healing we’re all sending you!
just got another update from greg’s family. he continues to remain stable. the doctors have reduced the sedatives enough that he opens his eyes when his name is called. hopefully they will be able to bring him back steadily and without incident. his family is staying at the hospital in shifts – returning home to get clean clothes and rest, then going back to the hospital to relieve the others. it is taking a lot of energy, but that comes from the love and support from all of us.
another note, i will be joining emily in the woods, so we won’t be receiving the updates and posting them until monday night or tuesday. so it’s extra important that those who love greg continue to send him healing energy during this time of transition back to the world of sunshine and life!
a quick update: Rebecca called last night and left a message. yesterday was another relatively stable day. that’s good – he needs at least one more of those before they will consider weening him from the ECMO. hour by hour he’s getting closer to recovery. please keep the good love coming!
today, greg’s stability improved. he slept through most of the night and had a quiet day. well, his iPod has joined him via his family, so not *too* quiet.
doctors and nurses from 2 hospitals met with the family to lay out the “plan”. if greg remains stable for the next couple nights, they will begin to back him off the ECMO machine. this is the next step to getting his body to care entirely for itself.
greg’s family says that he is receiving excellent and thorough care. they also ask for continued support, love and healing energy to be sent to greg – it makes a difference.
emily is away for the week, so bucky (her husband) is managing the blog for now.
Rebecca called tonight to let us know that Greg had a rought time last night and today, but is now stable. They switched Greg from the first ECMO machine to one that can be used for a longer period of time, but the changeover was difficult and they had to work on him through the night. There’s not much they know right now, but they’re hoping he can stay stable for 24 hours so that they can see if they can take him off the ECMO. They’ll know more tomorrow. They’re very tired so send out some energy for all of them. 24 hours isn’t long, Greg. You can do this.
Greg is literally on the cutting edge of technology as usual. He’s been moved to Boston Children’s Hospital ICU (where he is the oldest patient) to be hooked up to a state-of-the-art machine called an ECMO (Extra Corporeal Membrane Oxegenation) that oxegenates blood and cycles it through his system. He may be on this system for several days, but the longer he stays on it, more risks build up, so they’re watching him very carefully.
In addition to the ECMO specialists at Children’s he’s got the constant care of excellent doctors and nurses including his pulmonary surgical team from the Brigham. It took 12 doctors and nurses to move him from one ICU to the other… good thing the buildings are connected. To be safe, they currently have him intebated, sedated and physically paralyzed with medication.
They’re still not sure why his system is having such trouble, but at this point, they’re treating everything they can in hopes to get him fixed up again. This could be a reaction to the blood transfusion, or rejection, or something else… they’re just not certain.
Music can be an amazing healer, so Greg’s dad went back home this morning to get Greg’s iPod, so he can listen while his body is so deeply under. He’s in tough shape, so please continue to send your prayers to him and also to his family who are doing as well as they can be in the circumstances.
Hi all…
Emily here again. I heard from Eleanor. The surgery went ok, but the recovery has been tough. His system is having trouble equalizing following the proceedure. Before he was intibated this afternoon, he asked that I update his blog to let you all know. Please send him love, light and prayers as his system adjusts. Hang in there Greg! You can do it!
🙂 emily
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