Today much of the excitement did not occur in David’s room – but rather outside of his window. We had just finished rounding on David (I think around 9) and had not yet dispersed when the lights (well, actually everything) went out. The nurses remained calm and sprang into action to check on anyone who needs electricity to live, and within 5 seconds, everything was running on a generator. I don’t think David noticed a thing – except his tv piping music to him shut off (surprisingly, it’s not a vital device 😉). His room was super quiet as the white noise generator is not vital either, but he just slept through the whole ordeal. Meanwhile, outside his window was where the action was happening.
There has been construction going on there since the snow dump in March. We still have no clue what they are doing, but after the power went out, they immediately ceased operations. The fire department arrived and checked over the scene before leaving, and then Xcel arrived. During this we hear an announcement that all buildings have lost power and everyone is using emergency power. Another Xcel truck arrives, they do some stuff, and then it leaves before coming back (with likely a needed part). Around 10:15 the power came back on, but the Xcel folks continued to work throughout the day, and eventually replaced an entire electrical box. Needless to say, someone is going to have a big bill at the end of the day.
David meanwhile is playing the “hurry up and wait” game. The GI docs seem to be a little all over the place (or maybe the weekend ones wanted some things others do not – who knows. Anyway, David will not be getting an endoscope. They can not look very far, so they would not see anything. As for the imaging they wanted, it turns out it is just a dye and not a contrast, so it will not harm his kidneys. However, they would like David to hold still for the images, and by hold still, they want him to remain still for an hour! Our team was wondering what kind of 6 month old will hold still for that long. Therefore, it seems as if they will need to sedate David for that imaging. He was also due to have his quick brain MRI tomorrow – but that wasn’t scheduled until 6 PM. The team also did not like that time since they don’t really want their patients to leave the unit after they have gone home for the day. So now, it is hopeful that they can get both of those scans scheduled in close proximity to one another sometime this week, so it’s just one sedation and one field trip (preferably during the day when everyone is around).
Since there will not be an endoscope procedure, David’s aspirin will be restarted tonight. He needs that aspirin for his shunt. His bloody stools have subsided these last few days, so hopefully they remain gone once his aspirin is started back up. David is also now on an auto-advance on his feeds since he’s been tolerating it well. By end of day tomorrow, he should be back up to full feeds. We’ll have to see what they think about fortifying it after that.
Otherwise, David had another day of being happy. It is so nice seeing all the smiles he gives now. He had to do his PT today. He’s very tight, but they helped get him loosen up and showed us some positions we can put him in to work on staying loose. Music therapy accompanied PT today, which David seemed to enjoy. He took good morning and afternoon naps, and then spent the afternoon with the goldfish song on repeat since he really loves that song. Finally, we went on a wagon ride around the unit as a family to end the day.
Yikes! Glad they got the power back on. Grateful David wasn’t hooked up to as much now as before. Hope other kids there were all okay on the back up power. Now I’m catching up on all the news and adorable pictures of your kids. Love the wagon walks ones! And the foot art, cute! Praying for David, your family, and caregivers at the hospital, as all the balancing of meds and procedures and times goes on, that you feel God’s peace. And enjoy those David smiles!
What an exciting day – lots going on outside that window which is a bit of change in procedure 🙂
How wonderful is it that a ride in a wagon is such a joy for David? And it’s something he can do together with his brother and sister! My prayers for good days continue.