Day 244 - Can't catch a break!
Tuesday, August 31st, 2021
James is 8 months old (4 ½ months adjusted)! He is super grabby now, loves people, and lots of attention. He's a people person (this will be great for his resume). When someone is using their stethoscope to listen to his lungs he always grabs their hand or finger. Once when he was getting an echo and he just put his hand on top of this guy's hand basically showing him how to do his job. 😆 He is fond of music and loves when people sing to him. He is trying to talk so bad around the trach. It will only be a matter of time!
During this journey James has stayed in three different rooms in the NICU and five different rooms in the PICU! He is always so curious every time we are transferring rooms looking around at things down the hall, in the elevator, and not to mention when he was at home for a short bit. He really did love his car ride.
Even though it will be nerve-wracking to make the journey home again, we are ready! Loading up the stroller, then loading up the car, then loading back into the stroller, and then finally getting set up back at home. ⬅️ THIS is where the anxiety comes from about traveling! Each transfer takes about 20 minutes. We are working with his heavy dinosaur of a ventilator (not to mention the additional battery pack that is bungee corded to it), a gigantic suction machine, huge and heavy full size oxygen tank, his continuous feeding pump, an uncooperative pulse ox machine, an emergency trach bag, oh and a baby diaper bag (yes you know he's also still a baby)! Everything needs to be moved in a very specific order and it's also really important to know the battery life on these things, they're all different! That's where the label maker will come in super handy!
Okay, back to the hospital update...
He started to feel better today, finally getting all the Reglan out of his system! But James can't catch a break! He now has a rash that has spread all over his face and torso. Mom believes that it is the bactrim antibiotic that is being used to treat his trach infection. If so, that would mean that James has an allergy to sulfa just like Mom. It is little tiny red dots in splotchy patches mainly on his forehead, ears, chin, stomach, and chest.
Today we started back on the erythromycin and increased the dose to twice a day; 20 ml. We are also putting the clamping on hold. James got a urine analysis done and everything came back fine (thank goodness they did not do a cath). His feed rate for breastmilk is at 27ml /hour.
Today Mom got her first dose of the Pfizer vaccine. Not really a hard decision being that James is super high risk with a trach, already ventilator dependent, and also having A+ blood type. Just the other day, one of the babies in the trach group just passed away from Covid, the same age as James only born 2 weeks before. 😢 Not to mention that everyone around us in the hospital has Covid; they aren't isolated anymore. Since Mom has never had it, she does not have any antibodies and could not live with herself if something happened to James. But yes, it's super sad that this is germ warfare. 💯 🇨🇳🇺🇲🥼🧪🧫🔬🌐
 |
| Rash that appeared out of nowhere. |
Comments
Post a Comment