Yesterday we headed up to Kansas City to meet with the Vascular
Anomalies doctors (Dermatology, Hematology, Plastics, and Radiology
+ a nurse practitioner, nurse, and social worker). After having
labs run we took Greyson up to the appointment and after we waited
for almost 2 hours, the whole group of doctors all squeezed into
the tiny exam room to talk about their findings and treatment plan
for Greyson.
As far as Greyson is concerned, he is doing great - expect for the mass. After looking at pictures, we realized that the growth has shrunk a little. The doctors had thought it would since they felt it was a bit swollen due to "trauma" during delivery; it has gotten a little smaller, has lightened up a little in color (bruising has gone away), and is a bit softer. The really good thing is that he still doesn't seem to be bothered by it at all. In fact, we have been referring to it as he "buddy" or "friend" since he holds on to it and sometimes rests his head on it.
The team of doctors came up with the plan to use a couple of different treatments to take care of the growth. The radiologist will be sclerosing, which is injecting with a chemical that will shrink some of the cysts, targeting some of the larger cysts under his arm first to help his mobility of his arm and shoulder. Then in 6-12 months the plastic surgeons will remove what is left of the mass.
So it looks like we will be back up in KC in a month or so for the first of a few sclerosis procedures (working on scheduling now). We think we will be there for a few days and will stay at the Ronald McDonald House again. Greyson may or may not have to stay overnight in the hospital. The second sclerosis procedure will be done in about a month after the first as long as it works.
With planning for all of these procedures we now have to think about child care. The doctors talked a lot about keeping him well and suggested that we not take him to a sitter with lots of other kids for a while to keep him healthy. Please let us know if any of you know someone that would be willing to watch one child either at their home or our home.
Right now we are just learning how to be parents - today happens to be my first day home alone with him and he has slept through most of it. We have had a few visitors (bringing meals) and I am trying to get things organized (pictures, bills, paperwork, and normal home stuff). I will probably not put up any updates unless we learn more about Greyson's treatments or if things change.
Thanks to all of you that have been providing meals for us which has allowed us to focus on parenting and not cooking (thanks to Allison Rogers for coordinating this). We have enjoyed all of the visitors. If you would like to come see Greyson, just give us a call and we will set something up.
As far as Greyson is concerned, he is doing great - expect for the mass. After looking at pictures, we realized that the growth has shrunk a little. The doctors had thought it would since they felt it was a bit swollen due to "trauma" during delivery; it has gotten a little smaller, has lightened up a little in color (bruising has gone away), and is a bit softer. The really good thing is that he still doesn't seem to be bothered by it at all. In fact, we have been referring to it as he "buddy" or "friend" since he holds on to it and sometimes rests his head on it.
The team of doctors came up with the plan to use a couple of different treatments to take care of the growth. The radiologist will be sclerosing, which is injecting with a chemical that will shrink some of the cysts, targeting some of the larger cysts under his arm first to help his mobility of his arm and shoulder. Then in 6-12 months the plastic surgeons will remove what is left of the mass.
So it looks like we will be back up in KC in a month or so for the first of a few sclerosis procedures (working on scheduling now). We think we will be there for a few days and will stay at the Ronald McDonald House again. Greyson may or may not have to stay overnight in the hospital. The second sclerosis procedure will be done in about a month after the first as long as it works.
With planning for all of these procedures we now have to think about child care. The doctors talked a lot about keeping him well and suggested that we not take him to a sitter with lots of other kids for a while to keep him healthy. Please let us know if any of you know someone that would be willing to watch one child either at their home or our home.
Right now we are just learning how to be parents - today happens to be my first day home alone with him and he has slept through most of it. We have had a few visitors (bringing meals) and I am trying to get things organized (pictures, bills, paperwork, and normal home stuff). I will probably not put up any updates unless we learn more about Greyson's treatments or if things change.
Thanks to all of you that have been providing meals for us which has allowed us to focus on parenting and not cooking (thanks to Allison Rogers for coordinating this). We have enjoyed all of the visitors. If you would like to come see Greyson, just give us a call and we will set something up.
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