Eleanor is thiiiiis close to weighing a whopping EIGHT pounds! She loves her food, even though her protein supplement gives her the most epic gas. And I do mean epic. She farts as loud as a grown adult; nurses down the hall can hear her.
The plan for the little miss to get off of respiratory support has FINALLY commenced.
Eleanor started an 8-week course of steroids on Tuesday. She will get two full weeks of the big kahuna dose and then taper down until she weans off at the end of the 8 weeks. Should she need more steroids closer to time to get off, they can increase the dose for a few days without causing negative effects.
She is on the big kid steroid Orapred (similar to Predinisone, which I am sure many of you have heard of) which is an oral steroid she can take through her NG tube and doesn’t require an IV or any other new accessories.
She will be a 'roid raging little pistol butt for the first two weeks and should calm down after her dose begins weaning.
The plan is to extubate (get that dang tube out of her poor little throat) within the next week, and as early as this weekend (that is, only if she does absolutely stellar). She has to wean down one of her ventilator settings (PEEP) first.
Doctors say her other settings aren’t even that bad and that she does not require the typical 12-week course of 'roids because she is not that bad. Also LOL if you saw her X-ray and thought she was “not that bad.” Her lungs looked like clouds.
As the steroid weaning continues, her respiratory support weaning will also continue until she is just on oxygen. She can come home on oxygen, so #GOALS. She can also still be on steroids and be learning how to eat (the two things she has left to master to come home are eating and breathing). Oh, and once she is only on the nasal cannula, WE CAN GO ON WALKS!!!
Mom knows the doctors can’t say for certain, but she went with the question anyway of the timetable for home and whether September is reasonable. Dr. S gave a little “are you crazy” face and said he would think by August,but hopefully sooner! We are not getting our hopes up and trying to stay reasonable with the September, and if she comes home before that BONUS.
She can also come home with a G-tube (permanent feeding tube) if she is unable to master the eating business. While we think she will be a pro with the concept, it is often extremely difficult for the little ones to master breathing and eating simultaneously.
Steroids are also often associated with stunted neuro development. This was cause for concern when starting such a big steroid, but we were assured the benefits faaaaaaaar outweigh the risks. We decided Eleanor was already on the Mensa scale, so if anything, the steroids will just make her a generally smart little lady instead of a superior smart little lady. In addition, there are SO MANY types of therapies available that can work with her and achieve all of the development goals.
We still have a long road ahead that I’m sure will be filled with ups and downs, but we are excited she is starting a course of improvement and there is light at the end of the tunnel.
But you know El, she’s going to throw us some curve balls and we will just deal with them when the time comes (this is a baseball family, after all).
The plan for the little miss to get off of respiratory support has FINALLY commenced.
Eleanor started an 8-week course of steroids on Tuesday. She will get two full weeks of the big kahuna dose and then taper down until she weans off at the end of the 8 weeks. Should she need more steroids closer to time to get off, they can increase the dose for a few days without causing negative effects.
She is on the big kid steroid Orapred (similar to Predinisone, which I am sure many of you have heard of) which is an oral steroid she can take through her NG tube and doesn’t require an IV or any other new accessories.
She will be a 'roid raging little pistol butt for the first two weeks and should calm down after her dose begins weaning.
The plan is to extubate (get that dang tube out of her poor little throat) within the next week, and as early as this weekend (that is, only if she does absolutely stellar). She has to wean down one of her ventilator settings (PEEP) first.
Doctors say her other settings aren’t even that bad and that she does not require the typical 12-week course of 'roids because she is not that bad. Also LOL if you saw her X-ray and thought she was “not that bad.” Her lungs looked like clouds.
As the steroid weaning continues, her respiratory support weaning will also continue until she is just on oxygen. She can come home on oxygen, so #GOALS. She can also still be on steroids and be learning how to eat (the two things she has left to master to come home are eating and breathing). Oh, and once she is only on the nasal cannula, WE CAN GO ON WALKS!!!
Mom knows the doctors can’t say for certain, but she went with the question anyway of the timetable for home and whether September is reasonable. Dr. S gave a little “are you crazy” face and said he would think by August,but hopefully sooner! We are not getting our hopes up and trying to stay reasonable with the September, and if she comes home before that BONUS.
She can also come home with a G-tube (permanent feeding tube) if she is unable to master the eating business. While we think she will be a pro with the concept, it is often extremely difficult for the little ones to master breathing and eating simultaneously.
Steroids are also often associated with stunted neuro development. This was cause for concern when starting such a big steroid, but we were assured the benefits faaaaaaaar outweigh the risks. We decided Eleanor was already on the Mensa scale, so if anything, the steroids will just make her a generally smart little lady instead of a superior smart little lady. In addition, there are SO MANY types of therapies available that can work with her and achieve all of the development goals.
We still have a long road ahead that I’m sure will be filled with ups and downs, but we are excited she is starting a course of improvement and there is light at the end of the tunnel.
But you know El, she’s going to throw us some curve balls and we will just deal with them when the time comes (this is a baseball family, after all).
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