I apologize for the lack of updates the past few days. To be very honest with you, Nora and I have been in a funk now for several days. Basically since Monday.
Nora has been fatiguing a lot with bottle feeding. At this point, she is only able to eat about ten minutes before she starts to struggle. There are several things that could be contributing. First of all, Nora has a tongue tie, which can cause issues with feeding. In retrospect, I did kind of suspect that as she was having issues with latching when nursing before she even came to the hospital. Another reason also being that she is getting thickened formula, so it takes more muscle strength to get the food out of the bottle. The last, and probably most obvious is the progressive weakness that is caused by SMA. On Monday we decided to put in an NG tube to help supplement the oral feeds in hopes that it would allow Nora to use more of her calories for growth instead of just eating and breathing. The procedure went very well, Nora took it like a champ and didn't cry at all. We have only been bottle feeding her for about ten minutes as she usually wears out by then and the rest goes in the tube. She has been having some issues with distention in her tummy from air, so it will be nice when she has the g-tube because it is easier to let the air out that way.
The other thing that is wearing Nora out is breathing. She works very hard to breathe, thought the Bipap is helping her quite a bit. She only wears the Bipap when sleeping. At first we were using it primarily at night, but she has been doing better when she wears it for her naps during the day, so we have been putting it on her then as well. Thankfully when Nora has the trach it will be a lot easier for her to breathe, and we can much more easily manage her secretions as well. She has been having a lot of trouble with secretions as of late, and was having more issues today. Thankfully she does get Albuterol nebulizer treatments with therapy to help her keep her airway clear.
Physical, Occupational, and Speech Therapy have been coming to work with Nora as well. Speech is primarily helping with the feeding issues. Physical and Occupational therapies help with a variety of things, mostly range of motion and positioning. However, I have spoken to them about how to get Nora from place to place, especially for appointments with all of her equipment. They will work on setting up an appointment at a place called Lifescape, which specializes in children with special needs. Millie went there over two years ago for her stroller and they helped us so much. We are looking forward to seeing what they are able to do for us again. Cure SMA has provided us with a wagon and a car bed, so that helps immensely. Of course, there is also the issue of me needing a different vehicle at some point in the not too distant future. But this is all stuff we will figure out.
So far it looks like tentatively we are looking at surgery on Monday unless something changes. We are still waiting for the official word from both General Surgery and ENT, but I have a feeling they will confirm that tomorrow.
Everyone is taking wonderful care of Nora and I. The team has continued to work together to give Nora the best care possible, which is a huge comfort to our family. We have faith that these surgeries will help us improve Nora's quality of life, and allow us to keep her home for a good long time! So long as she does not catch an infection. I have stressed this many times, but again she just can't catch anything, and neither can anyone in our family because once one has it almost everyone else follows suit. It's impossible to keep all the germs at bay once they're in our home.
We greatly appreciate everyone's love, support and prayers as we continue this journey. We are being tested in an insane amount of ways, and though we have struggled we are continuing to try to persevere. Thankfully God is steady and faithful even when we fall short.
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