The Journey of James Weston

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 previ...

Saturday, March 13, 2021 Update:   James had a large weight gain last night. He’s now 2460g or 5 pounds 7 ounces.  His FIO2 has been around 52 most of today, which is better than the 60 yesterday and 57 most of the night.  His CO2 did go up from 66 to 70, which isn’t a large enough jump to be concerned with at the moment.  As of now, things are fairly steady.  Mom pumps, holds James, cleans bottles, stores the milk, and  spends her days and nights at the NICU supporting the nursing staff and respiratory team, while Dad tries not to get in the way, reads an occasional book to James, cleans some bottles every so often, and begins to transition back to business. It’s been approximately 100 days of hospital stays (since Mom’s original hospital visits in December) and the busy summer season is approaching.  Mom and Dad are making a great team making this all work and are taking it day by day.  Too much planning isn’t effective. Focusing on what’s out o...

Friday, March 12, 2021 Update :  James is having a steady response to the anti-inflammatory and steroid inhaler, along with the NAVA settings. He’s been at a steady 59 on his FIO2 and his CO2 level dropped from 78 to 66, which is great progress.  This shows James is responding wel to the adjustments so far. Mom got to hold James for another few hours today and Dad got to read a Tuttle Twins story to him.  James is getting 46 ML of feed and weighed in last night at 2370g or 5 pounds 3 ounces.  P.S. You can email James your love and support as often as you’d like:   JamesWestonAbramowitz@gmail.com

Thursday, March 11, 2021 Morning :   Since James has been staying 60 on his FIO2 and his CO2 came back at 78, the best thing for James is a few small adjustments. He will be starting Albuterol and Pulmicort today. Albuterol can treat or prevent bronchospasms.  Pulmicort works directly in the lungs to make breathing easier by reducing the irritation and swelling of the airways. Both will be taken twice per day until no longer needed.  Along with the steroid inhaler and the anti-inflammatory, the doctor made a change to the mode of ventilation to a NAVA setting. This is the best synchronized setting to help James be more comfortable.  The PEEP will remain the same at 11, the rest will adjust.  Neurally adjusted ventilator assist (NAVA) ventilation utilizes James’ neural respiratory drive to synchronize ventilatory support on a breath-by-breath basis based on his ongoing needs. (Fancy Google Search). Essentially, this means that when James exhales and ...

Wednesday, March 10, 2021 Morning :  Overnight, James had a calm evening. He did really well overall and sustained his FIO2 levels around 60 (which isn’t great, but it’s what James needs right now). James did gain some weight last night and is now 2300g or 5 pounds 1 ounce!  He’s a growing baby boy!!  However, his CO2 came back very high at 81.  This is concerning due to adding too much stress on his lungs. The only ways to release is to breathe out and urinate, but mainly exhale. This will just take time, and after 70 days, we know what patience feels like.  After speaking with the doctor, he’s suggesting we see how James does during the next several days. If he doesn’t make improvements, James will be assigned to inhale with a NICU version of a nebulizer to breathe in a steroid. Depending on tat progress, we can try a final round of DART, the previous steroid that James was on twice.  After that, we will see the progress James is having.  If James st...

Tuesday, March 9, 2021 Update :  James woke up this morning to a busy day.  It started with him getting his bi-weekly ROP test (eye exam). The results came back slightly improved, but mostly the same as last month (Stage 1, Zone 2) which is good.  He also got a new neobar that’s slightly larger (and pink) which is helping with his face not get irritated.  It seems to be a much better fit!  And pink is the new blue, so it’s all good.  🤷‍♂️  James also had a need for a  Blood transfusion. He got 35 MLs. After 4 hours of steady blood flow and his poor little hand having the IV in it, James was able to do skin to skin with Mom for 3 hours.  James weighed in last night at 2220g or 4 pounds 14 ounces.  He’s maintaining his feed at 42 MLs and is having steady bowel movements. Overall, James had a solid day and is recovering smoothly from the NIV the other day.  P.S. You can email James your love and support as often as you’d like: ...

Monday, March 8, 2021 Update : James had a pretty steady day recovering from yesterday. He rested most of the day, which is good. He weighed in last night at 2160g or 4 pounds 12 ounces, with his feed at 42 ML.  He is pacing to weigh in right around 5 pounds for his 10 week birthday on Thursday. James will be 36 weeks this week and approaching his due date of April 8. He is 15.3 inches long!  His most recent blood gas was 71 CO2 this morning and the X-ray came back showing atelectasis (white spots on the lungs) on his left side which means it’s not inflating. So, similar to a balloon releasing its air, James needs to be in a position to inflate that area. James has been lying on his right side most of today to allow more air into his left side.  For now, we are rooting James on to get more air into the left lung.  We will continue to monitor this area and during the next several days (maybe 1-2 weeks) we will see if James can have another attempt at the NIV or CPAP. ...

Sunday, March 7th, 2021 Update (6:45am): James gained more weight last night and is now at 2150 grams (4lb 11oz)! After 3/4 Thursday's recent ECHO we found that his PDA has closed!! He has had a slight increase in CO2 retention found during his blood gases, so because of that they had increased the rate to 25 on the ventilator. This will help dispell more of the CO2.  Hoping that the extubation will happen this morning! We are ready! James has been resting since yesterday morning.  UPDATE: At 8am this morning, James was EXTUBATED ! He is now on NIV which is a little different than CPAP. NIV provides ventilation support without having a tube down his throat. Please see diagrams below photos. They also gave him a larger OG tube to release air in his belly. No one likes gas pains! James had his first audible cry! Day 67! Sounded just like a baby lamb. He definitely put up a fight during the transition. Took about an hour to get him settled. He is now laying on his stomach b...