The X-rays performed on Porter showed fluid in his lungs. We were told it could be pneumonia, aspiration or aspiration pneumonia. There would never be a way to tell for sure. They began treating Porter for pneumonia with antibiotics, though they were assuming he had aspirated. I believe they made this assumption because of his feeding difficulties related to the fluid retention from the sugar meds. I asked if this could be pneumonia as a result of his surgery. They told me no. I think they lied – or tried to sweep that possibility under the rug.
Before they made the decision to readmit Porter to the NICU, a PICU doctor had come down to speak with us. He did a pretty good job of making us feel like shit. We told him that because of all Porter’s difficulties, the only way we could get him to eat a substantial amount was to feed him in a side-lying position. This doctor made it seem like we were terrible parents for doing this because he could aspirate easily in this position. We didn’t come to the decision to feed him that way on our own, the NICU taught us how to do it. When the ER staff talked with one of our Nurse Practitioners in the NICU, I was so happy that I wouldn’t have to deal with this doctor anymore. 5 minutes was long enough.
We moved back up to the NICU. I stayed the night with Porter. Even though it was against the rules, one of our favorite NP’s brought me a turkey sandwich and a soda that she got from the labor and delivery unit. She had the night nurse get me a bed and pillows. And she gave me her iphone charger since my phone was about to die. She told me she wouldn’t be back for three days, but she stayed overnight to check on me and Porter in the morning.
We all thought that Porter had aspirated. We all assumed it was because of the side effects from his meds. We decided to stop the sugar meds. We had been told that he would hopefully outgrow this sugar issue anyway so we decided to give it a try. A normal range for his blood sugar is 70-120. The majority of his were in the 50s – 70s. It was not a good sign, but they also weren’t critically low. We just made sure he was fed every 3 hours around the clock and hoped for the best. His fluid retention and a lot of the congestion began to dissipate. The congestion never completely went away. We began to think that maybe it was a coincidence that the congestion began around the same time as the medicine was started. I asked about an ENT consult. There was no pediatric ENT at our hospital.
Porter remained on oxygen through a nasal cannula. He was having multiple monitor violations a day. His heart rate would drop, his oxygenation would drop and his respiratory rate would go up or go way down. It seemed worse than when he was first born and under 3lbs. We knew that until his lungs healed, which can take a long while, he would probably continue to set off his alarms.
We started talking about a transfer to Children’s Hospital of Philadelphia so that we could get an ENT consult and have their endocrinology team look after his blood sugar issues. We were forewarned that they would very likely restart his sugar meds because they won’t accept anything less than a 70. We decided on the transfer right before the Memorial Day holiday so had to wait until the following Tuesday to request a transfer. They were able to transfer him that day. I rode in the front seat of the ambulance while Porter was in an incubator in the back along with two nurses from CHOP. They were ‘tag-teaming’ him as they said. One was holding his pacifier and rubbing his head while the other was patting his bum the entire ride because he wasn’t happy. I wasn’t happy either. Have you ever ridden (is that a word – ever since I was pregnant/became a mom my grammar has gone out the window) in an ambulance? The suspension is awful. I couldn’t see to the back, but I envisioned Porter flying around in his incubator over every little bump in the road for the hour and 20 minute ride.
I lied to you. This post is getting long so this will now be a 4 part story. Sorry.