Yesterday was a very long day courtesy of our home agency’s incompetency in their ability to execute doctors orders in a timely fashion. We already had two appointments, Urology and ENT scheduled beginning at 8:20a. Since the IGIV was a no show on Tuesday they had us come to the day hospital for the infusion. They did not want to wait any longer for several reason. First the Thanksgiving holiday slowed the information process and it took a few extra days to get the right concentration figured out. Once that was completed the order was sent eight days ago to the home agency for a Friday (a week ago) or Monday infusion. The agency asked if Tuesday was acceptable and the FA docs approved that. As of Tuesday afternoon when it was discovered the medicine was not going to be delivered the question of when it would was unable to be answered. It was also unable to be explained to us how this happened and why there was no warning. I was suppose to hear something back on Wednesday from them explaining the reason for the breakdown. Of course I did not, nor did I receive a call or message yesterday. So this morning after I receive a few other important phone calls we are expecting I will be calling much more unhappy than I was on Tuesday and let me tell you I was pretty pissed off. So because of all this as we said created this very long day. We were scheduled for day hospital at 11am after our two morning appointments. The IVIG was scheduled to go for 4 hours, due to some concerns with Elias turning flush red at one point which ended up being nothing of real concern, but for safety the infusion had to be paused and restarted so it took 6 1/2 hours instead.
During the day Elias was throwing up and needing constant suctioning of his trach. It began before we had even pulled out of the driveway in the morning. Elias probably vomited at least 8 or 9 times through the course of the day and night. We actually stopped his feeds last evening and ran pedialyte instead. Simply because it would be easier on the stomach and his body could rest a recover a little. If you think about when we don’t feel good, eating is not usually something we want to do, so we drink broth and clear liquids to stay hydrated. With Elias being G-Tube fed we are feeding him regardless if he wants it or not. So rather than press the issue and tired of clean-up and clothes changes less than 5 minutes apart we thought we would experiment. It seemed to work and the vomiting stopped. Too bad it was already 8pm by that time. It was also during this time that it triggered an answer to a question the urologist asked during the visit. Don’t you love that when you think of the answer 12 hours later. He was asking what symptoms Elias had when he had the 2 UTIs in the hospital. We blanked completely, all those details are a blur. We then remembered that how they discovered them both times was Elias would vomit many times through a 24 hour period. They would always treat it like a stomach or GI issue, but also would run a full range of test. CBC, sputum cultures, and urinary cultures. Bingo the urinary culture would always be positive. So we have placed a call in to ask for a urine culture to see if this is what is causing the vomiting as it has in the past.
In the urology appointment we had an epiphany. We brought up the cursed mucus fistula issues and leakage. His urologist looked at a few things on Elias and his chart and said that there is a fistula connecting the mucus fistula tract to his urinary tract. Apparently this is common in colorectal malformations. So why were the inpatient urology doctors unable to give us that info or if it is in his chart any doctor for that matter. So we now have an explanation for the leakage we are seeing and why he is now having more recurring UTIs. Some of his urine is flowing out of the mucus fistula and probably at times rescinding back into the urinary tract after being mixed with the rectal mucus, thus a bad combo causing bacteria to cross contaminate and develop into infection. Great so how do we fix this. The colorectal team will also fix this as this is a fairly involved and complicated surgery the urologist explained. So that has pushed the pull-thru back up to the front burner and it looks like February will be the surgery time frame. If we do not do this sooner vs. later we could be asking for more problems and we do not want that for Elias obviously. Putting off the colorectal was simply to have a break from the hospital, give Elias body some down time from surgeries and allow him some time at home. However that was only if doing so was not compromising his health, which at the time we made the decision the doctors agreed it was a good thing. Now things are different. So we are mentally gearing up for another hospitalization in the next 8-12 weeks. Hopefully this will be a brief stay for recovery only from the two surgeries. In January though the urologist wants to do another scope and dilation of Elias urethra. He is hoping to tag it on with the next bronchoscopy which we are awaiting a date for but were told it would more than likely be in January. That would also be when another ABR would be done as well.
Our ENT appointment was very simple actually. Well between the suction and the vomiting, but the actual exam and discussions were less complicated than past discussions. Dr Rutter told us he is getting very close to giving the green light to every to begin moving forward with some of the less pressing issues that we have put off because of the airway. He said it is still not ideal, but there is no telling how long ideal will take to become reality and we should not hold off on things Elias needs if there is no time table for improvement. Some of those things would be tests, studies and work-ups for oral feedings. Not that he would be cleared for them mind you, but so that we can see and stimulate that aspect of him and know that when the doctors are comfortable the risk of aspiration and airway compromise is reduced with feeds, they can give the green light to go without waiting. They also cleared Elias for home therapy non-nutritive stimulus which include things like tastes using colored lollipops and similar items. Elias has had this in the past with enjoyment on his part.
While overall the day was long and exhausting it did yield some results and answers to some questions that have been lingering and problematic. The ever changing list of priorities saw yet another facelift, but we have grown accustom to the constant changes and try to remain flexible with that. Despite the complications Elias had yesterday he had some periods of fun and times to show off. This morning he is trying hard to play as normal, but I think his energy is a little low, but he has not been vomiting just needing more frequent suctioning. We will see how he tolerates food when we start his feeds again at noon. Hopefully, there will be no problems just smooth sailing.