The Journey of James Weston

Wednesday, May 5th, 2021 Today our primary nurse was floated again. Yeah... So what is the purpose of signing a contract for primary nursing? 🙄 We maybe have her once a week... Anyways, we ended up having an excellent new nurse that we would love to have again. Could we please have some consistency? Or at least just give us the good nurses. 😉 Changes and today's events: Stopped all diuretics Increased calories by changing one of the feeds from breastmilk to formula. Right now he eats every 4 hours (6x a day) at 9:00, 1:00, 5:00. So now 3 of those will be breastmilk and 3 will be formula. We are also changing the formula to Sim Neosure from Sim Special Care. Weighed-in at 4,115 grams. James had time in the swing. We asked PT and Speech to come by tomorrow since he had a rough night. James' new Trach came in! The ENT Doctor came by to change it out and do a scope. She let Mom look through the scope at the carina and see the left and right main bronchus. James does have a little...

Tuesday, May 4th, 2021 May the 4th be with you! Today's events and updates: His primary care nurse was back. Thank goodness! She was also training an intern. But this intern is a great student and we would be glad to have her as a nurse someday. Night and day from last night's intern. Literally. James is receiving his 3rd & Final 4 Month Vaccine which is prevnar. They tried several times to get a catheter in for another urine culture but failed. They are trying to see if the urinary tract infection is getting better or not. If it is getting better, his last day with the IV and getting antibiotics will be May 8th. Custom trach not coming until Thursday, putting off Trach change until then. At that point, ENT will handle. Weighed in at 4165 grams, lost more weight from 4215 grams the night before. Just need to get to 5,000 grams to trial a home vent. Yesterday's results from wrist Xray checking for rickets: No significant change from 3/1/2021. 3:30pm - Mom and Dad did the...

Monday, May 3rd, 2021 12am - Wide awake. Photos below. 2am - Early Morning BPD episode. In the middle of Mom's pump, James had bradyed down to the 50s and desated into 40s. After that we did hands on and trach care. He lost some weight at 4215 grams (9lb 5oz). The night before he weighed 4220 grams. 3am - Looks like James is ready for some sleep. 9am - Hands on. James had a BPD spell and a massive diaper. The episode happened during the bowel movement, which is pretty consistent with BPD. 10:30am - Time in the swing 11am - Doctor updated us that James is doing well with his weight even though he lost last night. Overall for the week he is up. He also needed to get the rest of his 4 month vaccines. He only just had his 2 month vaccines at 3 months. Towards the end of the Doctor's examination while he was in the swing James had a really bad episode where he desated and bradyed into the 40s. 😥 2:30pm - BPD spell with brady and desat. 3:00pm - Checked blood (heel stick) for level ...

Sunday, May 2, 2021 Morning :  James had a fairly uneventful night, which is good!  He greeted his primary with a Brady and destat, but she knows how to quickly help him recover.  After a few diaper changes, bump in his PEEP to 14, cool towel on the head, clothes off, and put into the Boppy ... James is now calm and relaxed.  Afternoon:  After a calm morning, Dad read James two books. “The Rainbow Fish” (a gift from Dalila) and “The Grinch Who Stole Christmas.” (A gift from the Biggs family).  Then Dad held James for 75 minutes. They were about to bond and talk things through, specifically around playtime and fun when they get home.   And then ... The doctor came in and mentions that James is doing really well. He’s right where he’s supposed to be. His vaccines and shots will be pushed back a few days due to the UTI antibiotics. When Dad mentioned that we are approximately 4 weeks away from going home, the doctor quickly stated something along...

Saturday, May 1st, 2021 Lost weight last night, back down to 4060 grams (8lb 25oz). Morning Update from Doctor: Increased his feed up to 96ml/feed, since James has not been hitting his average daily weight gain. He has only been gaining 4 grams/daily on average when it needs to be more like 15. This is important for his brain. James' urine culture came back positive for a urinary tract infection. They started an IV in his head. He will get a course of IV antibiotics (gentamicin) run over 30 minutes once a day (q24). Good thing Mom suggested this to the Doctor. She had noticed that he was having more diapers than usual with just pee, sometimes they would be very light. The most important thing she noticed was that when James was having a spell and she went to go check his diaper he was always in mid stream peeing. (Hopefully this helps someone else who googles for baby UTI symptoms).  #urgencyfrequencyburning Want to know the worst sound in the world? The Mom nextdoor hysterically ...

Friday, April 30th, 2021 Overall James had a good day and another great nurse who was very familiar with trachs and g-tubes. It was great to have James active during the day. A few episodes but very short lived. 9:00am Doctor Bedside Report & Hands On Increased the pressure support above PEEP from 20 to 22. (We think this has helped today to recover sooner.) We think James may have a UTI so he needed to get a urine culture done. Unfortunately that involved getting cathed. It will take a few days on the results. Increasing his feeds to 90ml (2 oz). Tomorrow we change Doctors, one that we've had in the past. Wonder if she'll recognize James. Lol 10:00am Tummy time on Boppy with baby mobile and YouTube Lullabies 11:00am Sterile Procedure Urine catheter placed for culture.  So far by 6pm no bacteria has grown, but we will want to wait the full 48 hours. 1:15pm Physical Therapy PT stopped in to work with James. He was held for a short bit, focusing on him sitting up and holding ...

Thursday, April 29th, 2021 Last night weighed in at 4050 (8lb 14 oz) Tonight 4105 grams (9lb)! Today's events: 9am Physical Therapy Goal is to keep his arms and hands forward. Either with a rolled up towel or by pressing at his shoulders forward. We also need to put together a day time schedule of activities James can do to help with light cycling. 10am Bedside Update with Doctor James officially has hernia. The Doctor had Mom feel it. It makes a very loud squishy sound when you push the intestinal loop back into the abdominal wall. So James will definitely need to have surgery, but they want to wait closer to discharge so that he is bigger. We started microweaning the methadone in the afternoon. 1pm Speech Therapy James had several episodes during this. He really does love his pacifier and milk but was having a hard time due to the lung spasms. Goal is for Mom/Dad to hold James daily. Try to have as much skin to skin as possible. Even if this is simply James' head on our arm. ...