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Since getting the PEG placed on Monday, Ezra has been receiving 2 ounces of milk every 4 hours through the tube. It’s amazing how comfortable Ethan and I have gotten with using the tube in such a short amount of time. Ezra has been continuing to nurse and has been doing pretty well since the surgery. He does seem fussier than usual and on Friday I noticed that the bandages around the PEG were looking very gummy and wet. I called the surgeon’s office and they had me bring Ezra down to Portland to check it out. The nurse practitioner let me know that some “seeping” is normal, redressed the area and sent us home. We expected to be able to take all the bandages off on Monday.

Friday night I was noticing that the bandages seemed really wet again and on Saturday morning our home health care nurse came over to switch out the bandages. After Ezra’s 2 pm feeding, Ethan noticed that there was a large pool of milk around him on the bed and his onsie was quite wet.The bandaged area around the PEG was full of milk and chunks (sorry if this is TMI…). We called the surgeon’s office again- obviously quite concerned that the PEG was leaking. Ethan spoke with one of the surgeon’s in the office who told him that we needed to bring Ezra to the ER in Portland (about an hour drive). It had been snowing and sleeting all morning. Ethan asked if we could just bring him to be seen in Augusta (about a 10 minute drive). The surgeon told Ethan, “You need to be seen in Portland. I don’t want to give you a false sense of security. Be prepared to spend the night”. Obviously we interpreted this to mean we should get to Portland ASAP.

I am a Texan. I do not do well driving in icy conditions, but I loaded Ezra up in the car and headed out. Ethan stayed home with Daisy and I white-knuckled it all the way to Portland literally going about 45-50 mph the whole way there. Once we arrived, Ezra and I hustled in to the ER. They were expecting us and brought us right into our own little room in the back. There we met a wonderful nurse that was very attentive and helpful. Ezra and I waited about 5 hours in that little room before we saw the surgeon on call. During those 5 hours, we saw an ER doc who had a very strange bedside manner. At one point, he squeezed Ezra’s nostrils together and said “breathe through your mouth, little buddy”. I quickly said- he has respiratory¬† problems. Please stop”. The doctor asked about his labored breathing. I told him that it was part of the SMA- he always sounds very congested and “gurgly”. He seemed extremely concerned with the slight temperature that Ezra had been running (100.4). He asked about ear infections, urinary tract infections- of which Ezra has had none. I assured the doctor that my concern was more with the PEG tube leaking than it was with the slight fever. This doctor went on to order a chest x-ray and wanted to catheter Ezra to get a urine sample to check for a UTI. Seriously? Our amazing nurse concurred that this was probably unnecessary and helped me remember that I can decline. Which, of course, I did. We did do a chest x-ray and it was clear.

Finally the surgeon came in. He said that because of the way Ezra belly breathes, the PEG is getting jostled around and is keeping the hole open. He did not seemed too worried about the milk coming out and said we would have to keep the bandages on there for longer. We’ll also make a return trip to Portland sometime next week to see our regular surgeon. Okay. So I drove an hour through an ice storm to be told this was a normal complication. Great to hear, but really, couldn’t someone in Augusta have just told us this? So Ezra and I loaded back up in the Subaru and started the long, icy trek home…

Let’s just say I was quite relieved to pull into my driveway safe and sound. We are having one adventure after another…