Day 237 - DISCHARGE DAY!!! AFTER 8 MONTHS!!!

Tuesday, August 24, 2021

Late Night/Early Morning:  The night nurse tried to convince Mom and Dad to go home for the final night and that’s she’s got James covered.  This is always tempting, and after way too many fails, Mom and Dad didn’t want to risk anything for the final night.  So, Dad stayed and thanked the nurse for owning everything so he can sleep due to not getting much the previous 4 nights. 

She agreed and said that James is her only patient tonight. PERFECT! 

From 11p-12:30a, the nurse was good and helpful. Then she disappeared.  Dad attempted to go to sleep, but James didn’t want that to happen. He was fighting sleep (I guess he was excited to get home too). The feed alarm was beeping for 15 minutes, which shouldn’t happen. A good nurse comes in after 1-2 minutes at most.  So, dad assumed she got another patient. Nope!  She was on lunch and didn’t have anyone cover her patient. She comes in and says “sorry about that, I’ll prep the milk now.”  

James is on continuous feed and now has about an hour break due to poor planning and communication. This agitated Dad.  

James is not having a good night. Finally got him to sleep after 3.5 hours of patting, holding, singing, 2 diaper changes, suctioning, rocking … he was not having it!  And now it’s 5:15am and Dad finally gets to bed, and again, the feed alarm keeps beeping for another 15 minutes!  Unreal!  And our "nurse" is nowhere to be found again.  Dad sees her come out of a room socializing down the hall at the Covid end of the PICU.  Needless to say, after our short exchange of words, that nurse didn’t like Dad very much. A tired, fatigued Dad is not very pleasant to be around, especially after an emotionally charged day that Mom and Dad had yesterday with the Emergency simulation and the news of the miscarriage (check yesterday’s blog for info). 😞 

Morning:  Dad wakes up to the nurse saying “hopefully the blood labs this morning come back good so you can go home today" ... umm what??  We thought it’s discharge day no matter what!  Ugh … here we go again!  

The doctor said that James had low sodium levels (at 124 - 135 is normal) and couldn’t send James (or any patient) home at that level.  So, they gave him supplements and we had to do another blood test at noon to see what the results were.  We got to patiently (impatiently for Dad) wait for 1pm to figure out whether or not we get to go home. 

1pm:  The results are in and it’s 133 and the doctor said that it's okay to go home if we want.  Umm … YES!!!  Let’s get the heck out of here!! 

During the next few hours, Mom and Dad pack up the room, get James ready, pack up the car, load up the stroller, handle all the meds and schedule, get ready to hit the road! 

Lots of photos and videos taken of the final day. The final moment of taking the leads off James. The first stroller ride. The first time seeing sunlight and feeling the hot air of outside. The first time in a car. The first time seeing trees in motion. The first time in his home. 🏠 

Mom and Dad have the next journey ahead of them. Getting the med schedule down, setting up the house to their liking, getting into a sleep routine (our no sleep), handling trach care, handling gtube care, being attentive to the suction, attentive to the water overflow in the LTV tubing, getting a feed schedule that works along with fortifying the frozen milk, prepping all of the meds ahead of time, and making time to sleep, eat, and shower.  It’s overwhelming.  But we have a great support system around us to make it possible.  Grandma Juju and Aunt Robin have been AMAZING at helping Mom and Dad through the transition home. And there are a handful of NICU RNs and RTs who said they would help us as well! Truly a blessing!!

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭