We spent a lovely 5+ hours in the ED. I got a tour from one of my old nursing school cronies which was cool. However, that was a mighty long time to sit in the ED. Not fun. One of our favorite PICU docs came down to check on her, but they felt as though she was not quite bad enough to go to ICU. We ended up in Special Care, it’s like the ICU step-down. They took good care of B in Special Care. We were pleased, overall. Saturday Bentley remained pretty cruddy and was not very active at all. I held her a lot. We watched Woodlawn, good movie. Into the evening we started to get the feeling that Bentley just wasn’t doing as well as she should be. She wasn’t putting up much of a fight during treatments and was letting us do PT exercises without flinching. That’s not our Bentley. We voiced our concerns to the nurse and she promptly paged one of the Residents. Dr. Jorge, I’ll give you a shout-out. I appreciate the thorough assessment and concern given our observations. Following a few quick lab results and a x-ray Bentley was back on the radar of the PICU team.
Bentley was retaining a lot of CO2, her pH was looking bad, and her x-ray was worse than on admission. All “monitor” vital signs (BP, HR, O2 sat, and RR) were normal. Given her demeanor since admission I would not have expected the staff to pick up on those little things a parent notices about their child. She didn’t budge to lower extremity stretches, she didn’t move much to suctioning, and she just seemed out of it. ...The things only a parent will notice. PSA: If your child is in the hospital and you think something isn’t looking right or they need some attention, you are probably correct. If we hadn’t asked the question, she could have gotten much worse before anyone noticed.
The ICU team acted quickly. They immediately felt as though intubation was the best option. We conceded and went back to the waiting room while they did their thing. Lindsay and I said a prayer, thanking our Lord for our amazing daughters, and watched an episode of Suits to distract ourselves and stay awake.
Sunday was a steady day. Nothing too exciting happened. Still on ventilator, still requiring a good bit of support. Not on sedation. I did get her to listen to some music for about an hour before bedtime. She also let me read her stories. For the most part she did not want her ears on. She never does when she is sick.
The rest of the week was coupled with slow progression and the occasional step backwards. We were feeling very hopeful on Thursday evening and then again Saturday morning that the next day would allow extubation. In each case we were wrong. As of today, Sunday the 24th, she is still on the ventilator requiring a fair amount of support. It is hard to say exactly what is causing the set backs but it is likely her neuromuscular issues are playing a part in it as well as remnants of the virus. Oh, she had rhino virus, also known as the common cold. It turns out that thing was more than a booger. The docs are taking things very slow. They did a CT of her lungs today to see if there were any indicators from it as to what is going on. Some signs of bronchiectasis, but not sure of the plan following that discovery. We’ll continue to take it one day at a time and see where we end up.
Ally has been getting spoiled rotten during this fiasco and we are extremely grateful to our sisters for their support. She spent a few days with Melissa and a few days with Jessica. At each location she is being fed as much as she can hold and getting more attention than she gets at home. I don’t think she is complaining. Three of the 4 grandparents are here and helping out as well (the 4th has been dealing with the remnants of a month long power outage at the farm, gross). It just so happens we closed on a house a few hours before heading to the ER. The plan was to spend the weekend moving, but Bentley cramped that to a degree so Mom, Alana, and Butch stepped up to the challenge of helping us get the move started. They have also been a huge help filling some coverage gaps with Ally and Bentley. They even gave us a few hours of freedom to swing by a wedding reception for a friend. Huge thanks to our family, we couldn’t make progress this week without them.
Sorry for the bum update and the timing. I actually had a good update started I was hoping to post this week but Bentley changed those plans. I’ll finish it and throw it up soon so you can read about all she has been learning and accomplishing since our January hospital stay. Thanks for the texts and prayers for this little girl. She’s a champ to be putting up with all of this stuff. I would have gone crazy by now.