Well, it was moving day… Karl and I were walking on air. Our little boy was being transferred to a level II NICU, to prepare for our transition home in a couple weeks. We knew Kyle would be coming home on an NG tube and oxygen, but we didn’t care… Our little boy would be home.
Or would he be coming home soon? When he arrived at the new hospital, he was clearly in distress. His oxygen requirement had skyrocketed to 80%… In the coming days it became evident that the Neonatal staff was completely incompetent. Not only did I question how they ever got their Level II status, the nursing staff didn’t even respond to his alarms. At one point, he was on 100% oxygen and satting 70%… I had to literally yell at the nurse to call the dr and respiratory – this was after her not responding to my numerous pleas and begging.
Needless to say, we contacted Loyola University, and had him whisked out of there first thing Monday morning.
Arriving there was a little frightening – we knew he would have the best care here, but we weren’t prepared for “Community living”… Or the BORG SHIP, as I liked to call it.
Up until then, we had been in pods with no more than 6-8 babies when the pod was full.
It wasn’t long until the Loyola Staff jumped on things. In some cases, they over did it – but in all, we were pleased. Kyle ended up back on the vent the day after his arrival. They felt that his heart condition was Cor Pulmonale, based on a preliminary diagnosis by the technician. With that diagnosis, they couldn’t wait for the Cardiologists report – so he was intubated. In the first week it helped, but then things started to worsen, and when they discovered that it was Mild Pulmonary Hypertension (right-sided), and not Cor Pumonale – it was too late… And Kyle wasn’t self-weening as they thought he would.
He spent another 5 weeks on the vent before, in a last ditch effort prior to putting a trach in, they extubated him… To everyone’s amazement, he did better off the vent then on. His CO2 levels fell from the 80-90’s to 50-60’s. In addition, his oxygen requirement dramatically improved over the next few week… He was now ready to come home!
As expected, he was coming home on oxygen and an NG tube… But again, we were just thrilled to be coming home. July 8, 2004 – after 192 days, we were going home!