Finally home!!!
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The Gurbal Fam
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The Gurbal Fam
It only took 4 different ICU stays- but we have finally gotten John to a good place. 3 different times we were discharged, only to come home and only survive 4 nights before having to return to the ER.
We have FINALLY gotten over the hump and have now been home for 5 days!!!!! 🎉🎉🎉
From a breathing perspective- we’re in a very good spot. His breathing is periodically labored and noisy, but so far has improved without intervention and is far less severe than it’s ever been. He is on steroid nose drops, steroid breathing treatments, and is finishing up his last two days of systemic steroids. It’s this medicine that we think has gotten us to such a good point so we are nervous to see how things go after he’s off the medicine at the end of this week.
In order to help optimize his breathing, we were sent home with a feeding tube this time so that in the instances in which his breathing starts to get bad, we have the option to get him all his food without him having to work for it. This has been such a huge blessing and a learning curve, But overall he is taking most of his food through his bottle and we haven’t had to use it much yet.
We are hopeful now that we know he was aspirating and are working to prevent it, that we can eliminate any of the really severe respiratory distress that we’ve been seeing up until this point. The milk he drinks through his bottle has to be thickened, but he doesn’t seem to mind a bit and hasn’t skipped a beat. The aspiration is secondary to his inefficient and very rapid breathing, and we’re told this will also resolve with a little time. It is our hope that the feeding tube is also short term.
We have frequent follow ups with G.I., ENT, and pulmonology to help make sure we’re doing everything we can to optimize him and keep him at home. Every ounce he gains, and every inch he grows gets us one tiny step closer to being on the other side of this thing.
We have been tested in nearly every way possible in the last 7 1/2 weeks, but I’m cautiously optimistic in saying that the light at the end of the tunnel has finally started to show itself, although it is still miles and miles away. It’s probable that surgical interventions will still be needed for him before this is all said and done, but it finally feels like we have a good grasp on things and have gotten into somewhat of a routine at home.
Oral steroids don’t come without risks in babies his age, so we are only able to be on them for a limited amount of time. His last dose is this Friday so our biggest prayer right now is that he continues to maintain good breathing on his own even after the steroids are finished.
He may be nearly 2 months old, but in terms of a routine, sleep training, and any kind of feeding schedule, we basically brought home a newborn baby again. So bear with us while we stumble around like zombies for the next two months. 😵💫
We have FINALLY gotten over the hump and have now been home for 5 days!!!!! 🎉🎉🎉
From a breathing perspective- we’re in a very good spot. His breathing is periodically labored and noisy, but so far has improved without intervention and is far less severe than it’s ever been. He is on steroid nose drops, steroid breathing treatments, and is finishing up his last two days of systemic steroids. It’s this medicine that we think has gotten us to such a good point so we are nervous to see how things go after he’s off the medicine at the end of this week.
In order to help optimize his breathing, we were sent home with a feeding tube this time so that in the instances in which his breathing starts to get bad, we have the option to get him all his food without him having to work for it. This has been such a huge blessing and a learning curve, But overall he is taking most of his food through his bottle and we haven’t had to use it much yet.
We are hopeful now that we know he was aspirating and are working to prevent it, that we can eliminate any of the really severe respiratory distress that we’ve been seeing up until this point. The milk he drinks through his bottle has to be thickened, but he doesn’t seem to mind a bit and hasn’t skipped a beat. The aspiration is secondary to his inefficient and very rapid breathing, and we’re told this will also resolve with a little time. It is our hope that the feeding tube is also short term.
We have frequent follow ups with G.I., ENT, and pulmonology to help make sure we’re doing everything we can to optimize him and keep him at home. Every ounce he gains, and every inch he grows gets us one tiny step closer to being on the other side of this thing.
We have been tested in nearly every way possible in the last 7 1/2 weeks, but I’m cautiously optimistic in saying that the light at the end of the tunnel has finally started to show itself, although it is still miles and miles away. It’s probable that surgical interventions will still be needed for him before this is all said and done, but it finally feels like we have a good grasp on things and have gotten into somewhat of a routine at home.
Oral steroids don’t come without risks in babies his age, so we are only able to be on them for a limited amount of time. His last dose is this Friday so our biggest prayer right now is that he continues to maintain good breathing on his own even after the steroids are finished.
He may be nearly 2 months old, but in terms of a routine, sleep training, and any kind of feeding schedule, we basically brought home a newborn baby again. So bear with us while we stumble around like zombies for the next two months. 😵💫
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