Day 74 - Not much of a “pi” day over here
Sunday, March 14, 2021
Morning: James was looking forward to “pi” day. We’ve been discussing some of his potential favorites: breast milk pie, Simlac pie, and a potential favorite morphine pie. Unfortunately, James is having a tough start to his day today. Last night was a scare for us, and unfortunately, that continued into today.
Due to the bronchospasm last night, he’s been having a challenging time putting his lungs to work. A peak scare was when Mom saw the ventilator alert “The patient is no longer attempting to breathe.” 😳 Luckily, James is on the NAVA settings that has a safety feature to assist his breathing for him. His CO2 jumped from 66 to 88, so he had to get an emergency X-ray, which showed that both of his lungs have collapsed. This of course sounds scary, which it is, and James is equipped to build them back up - from the steroids, inhaler, vent settings, and his own trying. His ET tube that’s going into his lungs was adjusted to 9.5cm from previously at 8.5cm, due to James growing and getting bigger. This will also help him get more support that he needs. They adjusted his PEEP to 14 from 11, to give him additional pressure that he needs to open the lungs. Plus, he bradyed twice. At one point, we had 4 medical care professionals in the room to support James and was able to stablaize.
Afternoon: James CO2 levels went down, which is progress, from 88 to 79. He had a second X-ray, which showed some progress and his lungs are moving in the right direction. He does have air in his intestines that traveled down from his stomach, so he will need to pass that naturally. 💨 💩 They will do a gas later today to see how James is doing passing his gas. Dad suggested Taco Bell since that always works for him, but didn’t seem like a viable option for James.
Overall, James is calm and doing okay right now. His FIO2 went from 51% last night up to 80%, and is now at 77%. PEEP is still at 14. This means that James is requiring a lot of support to breathe right now. As a refresher, normal PEEP for a human is between 4-6 and FIO2 is usually 21%.
On a scale of 1-10, where does James fall on the chronic/severe lung disease/under development ... according to the medical staff, James is at a 10. There’s lot of white on his X-ray and they are concerned. They are hopeful due to James being so strong and all of the progress he’s made so far, AND there’s still lots of uncertainty with what is to come. Mom and Dad constantly remind each other to take it day by day ... that’s all we can do.
What can we do... well, Mom pumps every 3-4 hours producing approx 1200 ML or 40 ounces daily. James is consuming 368 ML or 12 ounces daily. Mom is beginning to load up the second deep freezer using the bag/brick method. Mom has invested approximately $1000 in pumping and cleaning supplies. Mom and Dad go through bottle soap, pump parts, flanges, bottles, duck bill valves, tubes, bags, and cleaning brushes regularly. Dad even attempted to bribe the respiratory technician to clean bottles for $100 (it almost worked). We understand why many couples choose to go the formula route due to the chaos that goes with providing breast milk, but we truly believe that James wants, needs, and deserves the nutrients that Mom can provide naturally. We can hold him when allowed to. We do skin to skin when we are able to. We read to him. We talk to him. We hum. We also do practice self-care when needed.
Although it’s challenging, it’s what we are in control of ... to do our part, to help James get through this NICU stay and eventually get home to enjoy the things that’s awaiting him, including his nursery, our pup Tommy, and all of the loved ones who haven’t been able to meet him yet. #FighterFight #BreatheEasy
James weighed in at 2495g or 5 pounds 8 ounces last night.
P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them!: JamesWestonAbramowitz@gmail.com
Morning: James was looking forward to “pi” day. We’ve been discussing some of his potential favorites: breast milk pie, Simlac pie, and a potential favorite morphine pie. Unfortunately, James is having a tough start to his day today. Last night was a scare for us, and unfortunately, that continued into today.
Due to the bronchospasm last night, he’s been having a challenging time putting his lungs to work. A peak scare was when Mom saw the ventilator alert “The patient is no longer attempting to breathe.” 😳 Luckily, James is on the NAVA settings that has a safety feature to assist his breathing for him. His CO2 jumped from 66 to 88, so he had to get an emergency X-ray, which showed that both of his lungs have collapsed. This of course sounds scary, which it is, and James is equipped to build them back up - from the steroids, inhaler, vent settings, and his own trying. His ET tube that’s going into his lungs was adjusted to 9.5cm from previously at 8.5cm, due to James growing and getting bigger. This will also help him get more support that he needs. They adjusted his PEEP to 14 from 11, to give him additional pressure that he needs to open the lungs. Plus, he bradyed twice. At one point, we had 4 medical care professionals in the room to support James and was able to stablaize.
Afternoon: James CO2 levels went down, which is progress, from 88 to 79. He had a second X-ray, which showed some progress and his lungs are moving in the right direction. He does have air in his intestines that traveled down from his stomach, so he will need to pass that naturally. 💨 💩 They will do a gas later today to see how James is doing passing his gas. Dad suggested Taco Bell since that always works for him, but didn’t seem like a viable option for James.
Overall, James is calm and doing okay right now. His FIO2 went from 51% last night up to 80%, and is now at 77%. PEEP is still at 14. This means that James is requiring a lot of support to breathe right now. As a refresher, normal PEEP for a human is between 4-6 and FIO2 is usually 21%.
On a scale of 1-10, where does James fall on the chronic/severe lung disease/under development ... according to the medical staff, James is at a 10. There’s lot of white on his X-ray and they are concerned. They are hopeful due to James being so strong and all of the progress he’s made so far, AND there’s still lots of uncertainty with what is to come. Mom and Dad constantly remind each other to take it day by day ... that’s all we can do.
What can we do... well, Mom pumps every 3-4 hours producing approx 1200 ML or 40 ounces daily. James is consuming 368 ML or 12 ounces daily. Mom is beginning to load up the second deep freezer using the bag/brick method. Mom has invested approximately $1000 in pumping and cleaning supplies. Mom and Dad go through bottle soap, pump parts, flanges, bottles, duck bill valves, tubes, bags, and cleaning brushes regularly. Dad even attempted to bribe the respiratory technician to clean bottles for $100 (it almost worked). We understand why many couples choose to go the formula route due to the chaos that goes with providing breast milk, but we truly believe that James wants, needs, and deserves the nutrients that Mom can provide naturally. We can hold him when allowed to. We do skin to skin when we are able to. We read to him. We talk to him. We hum. We also do practice self-care when needed.
Although it’s challenging, it’s what we are in control of ... to do our part, to help James get through this NICU stay and eventually get home to enjoy the things that’s awaiting him, including his nursery, our pup Tommy, and all of the loved ones who haven’t been able to meet him yet. #FighterFight #BreatheEasy
James weighed in at 2495g or 5 pounds 8 ounces last night.
P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them!: JamesWestonAbramowitz@gmail.com
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