Overdue Update

Deepest apologies for not updating sooner. The last 2 weeks have been a little hectic and busy. At least the first week was a fun hectic having the Grandma’s in town. This week however, was back to life as usual complete with fights (for Elias), twists, and turns that we have come to accept as normal.

This week began with identifying that our suction catheters were not correctly labeled for depth. Essentially, every trach patient has a suction depth, usually measured in centimeters. The point is since you are going inside “blindly” you know where to stop as to not exit the actual trach tube enter the trachea and cause irritation or bleeding. Elias’ just happens to be 5cm. Katharine was suctioning him Monday night and felt some resistance. Her first thought was that a mucus plug was beginning to form which could obstruct the airway. So she pushed saline in, which helps to break us the mucus secretions, but still felt the resistance. The next step is to bag saline in with an ambu bag. This helps to force air in and encourage the patient to cough and loosen the mucus. She still had the resistance, but Elias began to gag a little. This is what usually happens if you go beyond the suction depth. Imagine sticking your finger down the back of your throat, you gag, basically the same concept. She checked to make sure she had the mark correct and she did. Her next pass brought us blood, which was obviously from the irritation she had caused without knowing it. Elias seemed to be breathing well enough so she stopped suctioning. Then measured the catheter with a ruler and discovered the 5cm mark was actually 6cm from the tip. We check several others and found that half of what we had tested were wrong. After calling the supply company they got the lot number and tested there supply and found the same issue. We were told on Tuesday morning not to continue use of those catheters and we would have replacements later that day. Those were the only ones we had except for the 10-15 we have in his travel bag, which were from a different lot number. So we used those in the interim. The day got busy and Katharine worked late we realized at 9pm we still had not received the replacement catheters.  We still had some left from the travel bag so we waited until morning to call. When we did get a hold of the supply company we were passed around and ultimately told we would get a call back with an answer. No one knew anything about this! We finally heard back from them around 10am and they could not explain why the delivery did not occur, but they were sending it out tonight. We explained our supply issue and the best they could do was tell us they could get it there between 12-4pm. This week was also our monthly supply delivery, which was scheduled for Thursday afternoon. I mention this because when they showed up with the replacement catheters, they also had our Entral supplies, which are our feeding and care supplies. No big deal we thought, but the respiratory supplies were not brought with the exception of the replacement catheters. At the time it was not that big a deal we figured they would be there tomorrow as scheduled.  4pm came yesterday and no phone call with an estimated delivery time had been received. I had a gut feeling and asked Katharine to call. There was no delivery for us scheduled! After speaking to a supervisor and explaining how unreliable they had been this week, not to mention some issues we had the last 6 weeks, they agreed to send it out yesterday evening. We finally got it around 7pm. Of course, that could not be the end of the ordeal, that would be too easy. There were several items shorted to us. They were right on the packing slip, but it was not the correct number ordered. The most important being certain supplies pertaining to his ostomy. We ordered 2 boxes they sent 2 pieces. Now not having certain ostomy supplies is kind of like not having diapers. The big difference being you can’t run out to the corner store to get them. So this morning we are again playing chase down the idiot. It would not be such an issue if this were isolated, but as I said the last 6 weeks have been plagued with issues that we had sort of let slide until this happened. 3 mistakes in one week just does not constitute human error alone. Particularly when it comes to faulty supplies, I would have expected some follow-up on their end to ensure it was handled properly.

With that issue going on we also got a bit of news from one of our nurses. This was the new one that just started a few weeks ago and has been WONDERFUL! Elias loves her and they got along so great. Yes I said got as in past tense. We finally felt as though we had found a team of nurses that really did their jobs well and gave Elias the care he deserves. Unfortunately, that dream was short-lived. We were told by her yesterday that she had a new job working for a government agency and starts next week. While this was not news we wanted to hear, we are happy that she is able to advance in her field with this opportunity. So now we are back to interviewing again. I have several today and my first impression on the phone yesterday setting them up did not go well. I’ll try and keep an open mind though, not everyone has proper telephone manners and that is not a reflection on their performance.

Finally, we did have doctor appointments yesterday. Not too much to report on changes as they are generally pleased with the way Elias has been doing. They increased his prevacid to twice a day because the g-tube has started its leaking issues again. The hope is to neutralize some of the acidity for the stomach to reduce the amount of skin irritation around the stoma. We are also weaning the albuterol to an as needed basis with at least two doses per day for now. We are leaving the       atrovent dose alone staying at every four hours.

As for Elias birthday report, it was fairly low key. We had intentions of feeding him a small amount of applesauce as his “birthday cake” but Elias was having a few breathing issues that day. Nothing major just enough to make us a little uncomfortable with introducing food by mouth, especially since the doctors have not formally given the Okay. We decided staying at home was better than the potential ER visit if he aspirated. So that was a little disappointing, but Elias made up for it in entertainment value as he showed off all week for his Grandmas. It was truly amazing to watch him and all the things he is learning to do now. As we watched proudly, we recalled how fragile he was this time last year. How much there was for him to have to conquer, most of which we did not learn until much later. While it was simple and quiet his birthday was a pleasant reminder of just how hard he has fought and how amazing his spirit is inside.