We are still in the hospital in case you were wondering. I anticipate that we will be here another few weeks. We transitioned out of the PICU on Friday afternoon and onto the TCC floor for medically complex pulmonary children. Many of the kids on this floor have trachs, vents or are on BiPAP; and most of them have lengthy hospital stays.

Jackson had a high heart rate all last week, which was concerning. The TCC team determined that he wasn’t ready for his lower BiPAP settings. As a result, they increased his BiPAP pressures on Sunday and his heart rate improved. However, he didn’t get any windows off BiPAP until today, when he did two 30 minute windows. Apparently higher heart rate is a good indication that these types of kiddos need more support.

When we came to the TCC unit they put us in the tiniest room on the floor, which is very inconvenient for accommodating a BiPAP machine, cough assist, vest treatment machine, cooling blanket machine, wheelchair, a minimum of one family member and hospital staff. However, the room across the hall opened up on Monday and we were transferred to the hospital equivalent of the penthouse suite (I’ll try to post some pictures in the next blog). Our new room is humongous and fits all of the medical equipment nicely, which is very good because I just brought Jackson’s stander to the hospital.

I am convinced that Jackson’s health will improve quicker if he’s able to get out of bed and upright more so I got the green light to bring this monster to the hospital today. We will make our first attempt to get him in it tomorrow, which will be interesting as we have to account for his leads, g tube feeding line, IV line and the BiPAP mask and tubing.

Overall, Jackson is much healthier than he has been over the past few weeks but we still wish he would hurry up and get back to his baseline. It’s frustrating being inpatient this long. Again, thank you for all of the prayers and support.