Home again. (But not for long.)
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The Gurbal Fam
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The Gurbal Fam
John was most recently discharged from the hospital last Thursday. He came home this time on .5 L of oxygen to wear when he’s sleeping and in his car seat. He was able to eat about 75% of his milk via bottle and we have the NG tube to ensure he gets the rest.
Over the weekend, we decided a quick weekend trip to TN was feasible, so we packed up! Overnight Saturday night, his breathing started to look rough so I drove him back to Atlanta just in case we needed to go back to the ER. Overall, he looks very *meh* but has been stable enough to stay home.
His breathing is periodically very labored, hectic, and almost panicked. These episodes are horrible to watch and the look in his eyes is truly heartbreaking. In addition, when his breathing is bad and we have to feed him through the tube, the hunger induced screaming lasts for about 30 minutes, until his body realizes it’s been fed. He’s able to distinguish between the pacifier and the bottle, so the attempts to soothe him with the pacifier are unsuccessful. These episodes are also very horrible to watch him scream for food, unable to really comfort him.
It just so happened that yesterday was a bad day for him, and happened to coincide with his ENT appointment. The doctor is not at all pleased with his breathing or what he saw when he looked inside his nose, so John will be going back to surgery probably someday this week. They will be replacing the stents and our hope is to leave them in for two weeks so that once they come out, his nose will heal normally and not close back up again. Exact surgery date is TBD, and our goal is to keep him home and support him until his next surgery day.
This process continues to be exhausting in every way possible- emotionally it’s hard to watch your baby struggle to do basic things like eat and breathe; physically it is hard when we’re running on zero sleep, and the hours of screaming become very exhausting and overstimulating; financially, we are in way over our head and the timing did not work out in our favor because we got new insurance this month-all of our deductibles have reset and his total medical costs (before insurance) are well over 1 million dollars….
Our friends and family continue to show up for us in so many different ways and it’s truly the only thing that’s keeping us going. I’m always in pursuit of silver linings and, despite how horrible the last nine weeks have been, there’s still so much to be thankful for.
Collins is at the funnest age and we are absolutely loving seeing her thrive and become her own little person. She’s truly the best part of our days and is keeping us laughing despite it all.
Our efforts to help John grow have started to pay off!!!! In just 9 days, John has gone from 8 pounds to 9 pounds, 6 ounces!! He can finally fit in clothes sized for his age and even has a roll or two. 🥰
We are endlessly thankful for our village and how people continue to support us as we support John. We pray one day that this will all be a memory. Until then, please keep our boy on your prayer list, he needs them. 🩵
Over the weekend, we decided a quick weekend trip to TN was feasible, so we packed up! Overnight Saturday night, his breathing started to look rough so I drove him back to Atlanta just in case we needed to go back to the ER. Overall, he looks very *meh* but has been stable enough to stay home.
His breathing is periodically very labored, hectic, and almost panicked. These episodes are horrible to watch and the look in his eyes is truly heartbreaking. In addition, when his breathing is bad and we have to feed him through the tube, the hunger induced screaming lasts for about 30 minutes, until his body realizes it’s been fed. He’s able to distinguish between the pacifier and the bottle, so the attempts to soothe him with the pacifier are unsuccessful. These episodes are also very horrible to watch him scream for food, unable to really comfort him.
It just so happened that yesterday was a bad day for him, and happened to coincide with his ENT appointment. The doctor is not at all pleased with his breathing or what he saw when he looked inside his nose, so John will be going back to surgery probably someday this week. They will be replacing the stents and our hope is to leave them in for two weeks so that once they come out, his nose will heal normally and not close back up again. Exact surgery date is TBD, and our goal is to keep him home and support him until his next surgery day.
This process continues to be exhausting in every way possible- emotionally it’s hard to watch your baby struggle to do basic things like eat and breathe; physically it is hard when we’re running on zero sleep, and the hours of screaming become very exhausting and overstimulating; financially, we are in way over our head and the timing did not work out in our favor because we got new insurance this month-all of our deductibles have reset and his total medical costs (before insurance) are well over 1 million dollars….
Our friends and family continue to show up for us in so many different ways and it’s truly the only thing that’s keeping us going. I’m always in pursuit of silver linings and, despite how horrible the last nine weeks have been, there’s still so much to be thankful for.
Collins is at the funnest age and we are absolutely loving seeing her thrive and become her own little person. She’s truly the best part of our days and is keeping us laughing despite it all.
Our efforts to help John grow have started to pay off!!!! In just 9 days, John has gone from 8 pounds to 9 pounds, 6 ounces!! He can finally fit in clothes sized for his age and even has a roll or two. 🥰
We are endlessly thankful for our village and how people continue to support us as we support John. We pray one day that this will all be a memory. Until then, please keep our boy on your prayer list, he needs them. 🩵
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