Hi everyone,Today is Thursday, March 25th and Gemma is 35 days old (5 weeks today).
In the previous update Gemma was making quite a bit of progress, but as things go around here it is a bumpy path of many ups and downs.
Gemma has had somewhat of a challenging week, she has been extremely sensitive to handlings and her stats haven't been as stable as they were the previous week. She developed pneumothorax again that went away after a few days, but then has recently developed chylothorax again a few days ago that will hopefully reabsorb on it's own without reinserting chest drains.
Gemma has had a lot of handling and blood work lately so it may be related to her unsettled state but as we let her rest she seems to get better so hopefully whatever is bothering her will be resolved soon.
Gemma has had somewhat of a challenging week, she has been extremely sensitive to handlings and her stats haven't been as stable as they were the previous week. She developed pneumothorax again that went away after a few days, but then has recently developed chylothorax again a few days ago that will hopefully reabsorb on it's own without reinserting chest drains.
Gemma has had a lot of handling and blood work lately so it may be related to her unsettled state but as we let her rest she seems to get better so hopefully whatever is bothering her will be resolved soon.
We received the results from the EMG (nerve and muscle conduction test) and it came back that her disorder is more 'nerve - sensory' related than muscular, however they can't rule out a muscular disorder and are therefore waiting on the SMA results to come back (another couple of weeks).
I have asked to set up a meeting with neurology so that we can ask them some questions and hopefully get an idea of what other disorders we might be able to test for and some idea of what we can expect.
Gemma is still on diuretics, but they have weaned her down to two instead of four. Her edema has come down significantly, though still remains a bit swollen on her sides and lower extremeties.
Over the last number of days Gemma has been quite lathargic, they did a hemogloban test because they thought she was anemic but her levels appear fairly normal. We also did a white blood cell count in case she was contracting an infection but that came back normal as well. Some of her other levels are a bit low so they are giving her some supplements.
Babies can't tell us what is wrong so we have to go by their levels (blood work, heart rate, blood pressure, oxygen...etc) so it is hard to know what is happening at times.
Get well soon Gem.
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