(Almost) 12 weeks.
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The Gurbal Fam
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The Gurbal Fam
It has been two weeks since John had his stents placed in both sides of his nose, and has been six days since he returned to the OR for the revision. He has had periodic issues with high heart rate, and a few electrolyte abnormalities, but overall his breathing has looked better this week than it’s ever looked in his ENTIRE LIFE. 🤞🏼🤞🏼
His left nostril is still swollen shut but he’s been doing incredible with just the one side. He’s still requiring ICU level care due to his need for hourly suctioning and difficult airway. As of right now, the plan is to hold the course and maintain everything as it is in preparation for another trip to the OR next Thursday. It is our hope that at that time the right side of his nose will be looking very good and his septum will have had time to heal so that we can address the issues on the left side with a new stent.
We are constantly adjusting his tube feeds to find something that helps support his weight gain, but eliminate the risk of reflux and aspiration. We’ve struggled to find a good balance in this area and his weight has been trending downward this week. We started a new formula this week that will hopefully help his reflux and give him extra calories.
His “sauna box” (a preemie isolette with the humidity cranked up) has been a game changer for keeping his secretions thinned out enough that they can be suctioned. ENT wants him to stay in his box for the foreseeable future, which will keep him in the ICU (which is actually where we prefer him to be!)
We are on day 16 of this ICU stay, and are looking at AT LEAST 8 more days at hotel CHOA (and given John’s history- it’s more likely 10-14 more days, or more….). The length of this stay will depend on how he does before/after his surgery on next Thursday.
We will continue to lean on our friends and family to help us navigate this adventure. We’re so grateful for the small victories and continue to pray that all of our efforts will pay off, and there’s minimal swelling once the stents do come out next week. 🤞🏼🤞🏼
His left nostril is still swollen shut but he’s been doing incredible with just the one side. He’s still requiring ICU level care due to his need for hourly suctioning and difficult airway. As of right now, the plan is to hold the course and maintain everything as it is in preparation for another trip to the OR next Thursday. It is our hope that at that time the right side of his nose will be looking very good and his septum will have had time to heal so that we can address the issues on the left side with a new stent.
We are constantly adjusting his tube feeds to find something that helps support his weight gain, but eliminate the risk of reflux and aspiration. We’ve struggled to find a good balance in this area and his weight has been trending downward this week. We started a new formula this week that will hopefully help his reflux and give him extra calories.
His “sauna box” (a preemie isolette with the humidity cranked up) has been a game changer for keeping his secretions thinned out enough that they can be suctioned. ENT wants him to stay in his box for the foreseeable future, which will keep him in the ICU (which is actually where we prefer him to be!)
We are on day 16 of this ICU stay, and are looking at AT LEAST 8 more days at hotel CHOA (and given John’s history- it’s more likely 10-14 more days, or more….). The length of this stay will depend on how he does before/after his surgery on next Thursday.
We will continue to lean on our friends and family to help us navigate this adventure. We’re so grateful for the small victories and continue to pray that all of our efforts will pay off, and there’s minimal swelling once the stents do come out next week. 🤞🏼🤞🏼
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