We got home from the local 4th of July celebration less than an hour ago. Caden got to see fireworks for the first time. Fireworks were a fitting way to cap off this weekend. It was eventful to say the least. Before I get too far into the excitement of the weekend, let me say that Caden is doing great. So don’t let the two visits to MUSC Emergency room scare you.
Emergency room visit number one came on Friday evening. Caden had some mild bleeding from the incision where his surgery was done earlier this month. We have been keeping an eye on it and actually had the doctors look at it earlier in the week. They said to call if it got worse and on Friday evening it did get worse. It was partially due to his tummy time which he really needs. Caden’s tummy exercises helps to build strength in his upper body and arms. This also causes him to lay on his g-tube which has a little disc around the g-tube site. This little disc around the g-tube reaches just far enough to touch the scar from the surgery. This caused the scar to get irritated in that spot and bleed a little. The surgeons came down to the ER on Friday evening to look at Caden. They said the scar looked okay for now but to continue to monitor it closely.
Emergency room visit number two came this morning. Caden’s g-tube malfunctioned and Sherry broke it worse when trying to fix it. The g-tube ended up needing to be replaced. There really was not much anyone could have done to fix the original g-tube once it malfunctioned. The malfunction is can ultimately be attributed to two of Caden’s medications in my opinion. The Calcium and daily Vitamin with Iron are both very oily and cause things to be much more lubricated in places that were not designed for that much lubrication. Anyway, today turned out to be one heck of a battle for Sherry and me. The ER doctor did not want to believe us when we told him that the g-tube could simply be changed out by anyone who knew how to do it since it had been in for more that three weeks. You see, the attending surgeon told us when the new g-tube was placed that it needed to stay in place for three weeks before it could be removed and replaced. After the three week mark from June 6th, it could actually be removed and replaced by Sherry or me if necessary. That is as long as we had been trained on how to do so. Well, today the ER doctor did not believe our story second handed over a Nurse Practitioner who he spoke to on the phone. She told the ER doctor three months was the magic time for having a g-tube in before it could be changed without a surgeon doing it. So we went around and around with the ER doctor until one of the ER nurses got brave enough to call the on call attending surgeon for pediatric surgery to confirm our story. Basically, the logic hit with her. Why would we have an appointment the first week of August to learn how to replace the g-tube if our story was not correct? The first week of August would be approximately two months after the g-tube was inserted. We basically threatened to walk out and make do with the malfunctioning g-tube until Tuesday. The ER nurse saw that we were not bluffing and made the call to the surgeon which of course had more weight than the nurse practitioner who gave the incorrect information earlier. All of this took approximately six hours today. We had patiently waited for over four hours after the first bit of misinformation from the nurse practitioner. We expected to get things sorted out when the pediatrics surgery resident on call showed up and found that the tube had been in for more than three weeks. The problem with this plan was that he keep getting called to more urgent situations and never made it in to see us on our first four hours in the ER. We made it through one feeding with the malfunctioning g-tube while waiting; we were not going to put Caden through a more invasive procedure than was absolutely necessary today.
After all of that we went to the Goose Creek fireworks this evening. I went out and bought a portable fan to help keep Caden cool. This was just about the best twelve dollars I ever spent, plus about ten dollars for the eight D-size batteries. The fan worked great. You can see Caden and I chilling in front of the fan in the tent in one of the few pictures I posted tonight. Yes, the tent works great for giving Caden and Riley a cool place to hang out while waiting on dark to come.
Don’t forget to check out the new pictures.
Oh yeah..I had to come back and add this note. Caden is pushing 16 pounds now. He was weighed today at the ER at 15 pounds 15 ounces.