Hospitalization, part 5 (I think?)
In support of
The Gurbal Fam
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The Gurbal Fam
John is two months old today! What a life he’s had already….
We were thrilled to get EIGHT whole days at home as a family and enjoy some normal things! Unfortunately, as we feared may happen, John’s steroid taper finished and he started to decline shortly after. We braved the storms Saturday night to make a return trip to CHOA, where we’ve been welcomed back to our second home, the PICU.
Thankfully, John remains stable and is only requiring a little bit of oxygen. We’re having to alter our approach, and the new plan is for us to go home on oxygen that he will be on 24/7, for the foreseeable future. We’re also constantly working to modify and optimize his feedings, while not pushing it too far since his breathing is impaired. We are FINALLY seeing steady weight gain and are thrilled that we’re now weighing in around 8.5 pounds! Time and growth are the only two things that will help “fix” his nose.
We’re looking at discharge in a few days- which is exciting- but being at home with him and all his needs is exceptionally challenging. 24/7 oxygen is a new logistical challenge, on top of the logistics of a feeding pump, frequent breathing treatments, all in addition to the normal newborn challenges.
We are SO thankful that it seems we’re making progress. John was only ever able to tolerate being out of the hospital for 3-4 days, but we recently made it a week!! The most realistic goal for him is that his time at home gets progressively longer, and then eventually we just never come back!! 🤩 this is likely months down the road but any step in the right direction is a reason to be thankful.
He is being watched and cared for by so many. We are under the watchful eye of the ICU doctor, pulmonology, ENT, OT/speech, GI, endocrinology, cardiology, and his general pediatrician. All of these disciplines will require outpatient monitoring and treatment once we are discharged. We’re so thankful for CHOA and the care they’ve given our boy. 🩵
We were thrilled to get EIGHT whole days at home as a family and enjoy some normal things! Unfortunately, as we feared may happen, John’s steroid taper finished and he started to decline shortly after. We braved the storms Saturday night to make a return trip to CHOA, where we’ve been welcomed back to our second home, the PICU.
Thankfully, John remains stable and is only requiring a little bit of oxygen. We’re having to alter our approach, and the new plan is for us to go home on oxygen that he will be on 24/7, for the foreseeable future. We’re also constantly working to modify and optimize his feedings, while not pushing it too far since his breathing is impaired. We are FINALLY seeing steady weight gain and are thrilled that we’re now weighing in around 8.5 pounds! Time and growth are the only two things that will help “fix” his nose.
We’re looking at discharge in a few days- which is exciting- but being at home with him and all his needs is exceptionally challenging. 24/7 oxygen is a new logistical challenge, on top of the logistics of a feeding pump, frequent breathing treatments, all in addition to the normal newborn challenges.
We are SO thankful that it seems we’re making progress. John was only ever able to tolerate being out of the hospital for 3-4 days, but we recently made it a week!! The most realistic goal for him is that his time at home gets progressively longer, and then eventually we just never come back!! 🤩 this is likely months down the road but any step in the right direction is a reason to be thankful.
He is being watched and cared for by so many. We are under the watchful eye of the ICU doctor, pulmonology, ENT, OT/speech, GI, endocrinology, cardiology, and his general pediatrician. All of these disciplines will require outpatient monitoring and treatment once we are discharged. We’re so thankful for CHOA and the care they’ve given our boy. 🩵
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Debbie Stokes
Nanacolefive