Well Friday, our first day home again was not as quiet and relaxed as we would have liked, but that rarely is the case on any given day. The point was we were home and we would gladly take it. Yesterday was better with fewer issues. Elias really seemed happy to be home as well. He was looking at everything and anytime we picked him up he would get so excited. It was great! The reason for the action Friday was minor, but it did raise a little concern with respect to the open wound. No one really considered the fact that with Elias being so small that everything is within inches of each other (colostomy, G-tube, & open wound) and that stool leaking from the colostomy bag might migrate into the wound. That would not be good. We had a close call with that Friday late evening. Fortunately the bag had just started to leak but it as enough to begin wetting the corner of the gauze closest to the bag. We simply changed the dressing, but it now means much more frequent checks on the bag and more aggressive decisions on when to change the bag. We also are having issues with the G-tube leaking. No not the leaking we have had in the past, but the med port is leaking and because we use the Farrell Valve Bag the connection for that does not fit the G-tube Elias has in (MIC Disc) so it is also leaking from there as it is not a snug fit. An adapter is required, we know this from the many months when we had this disc before, however the hospital and the home supply company think we are insane and have no clue what we are talking about. We even found the adapter online for them and they still do not know. So we have traded one leaking problem for another. We wonder if the G-tube will ever be problem free, Ha Ha Ha! Yesterday I went down to a local pharmacy and medical supply store we had discovered a few weeks ago. The leaking was getting worse so at this point we were desperate to find this adapter. I went in described what I was looking for, gave who I thought was the manufacturer and low and behold they knew exactly what I was talking about and gave me three. That is certainly a poor reflection on the hospital and the Home Care Company when your neighborhood mom & pop pharmacy can assist you better. We found a picture on the internet and everything for them and they were still clueless. The home company sent out something they thought would work, but it was a bolus adapter, did not have the y-port, and was exactly the same size connection as the G-tube, so it was useless. We are keeping the package with us at all times going forward.
The last few days in the hospital were a whirlwind of emotion and realization. Through the discussion of concerns with the medical team we realized that there was a very different philosophy and opinion than we had been working with. While we had made this move primarily for the care with FA the other disciplines he needed due to that were also available at a very high level. We welcomed the opportunity for another opinion, but we certainly were hit with much more than we anticipated. It has been a touch overwhelming to be honest. However, we realized on Wednesday that everything we had been working with and understood with why Elias had the trach size he did was contrary to the philosophy and technique this team uses and with great success. We explained to the doctors that we had logically accepted the reasons for the 3.0 trach tube size and why an upsize was never made based on the management philosophy in Maryland. Not that it was wrong there, not that the doctors were incapable, just different opinions. Here though this is a tried and true technique that draws patients from all over the world. So many that the doctors we are seeing account for more than 10% of all North American Trach Tube sales. We realized that we needed to unlearn and devalue (to an extent) the knowledge we had already. That was difficult. Mainly because it means having to find the line between placing blind trust in doctors that hardly know Elias yet, being open minded enough to accept what they are saying without being to focused on the prior philosophy and maintaining the integrity to question things for the sake of advocacy. It is difficult to describe in words how all of that came about and how it actually felt, but it was rough, confusing, and overwhelming. The doctors seemed to understand our dilemma and as one doctor told us, “that is very pragmatic of you.” To simply take that step back and relinquish some of that protective parental nature and say we have to accept the differences. We will continue to advocate as always. We just have to relearn some things to be able to help understand. Elias is complex and while we have always said this, for the first time we have actually felt it. Going into this, what was to be a simple work-up and evaluation has, for both sides, spiraled into a confusion laced scenario that we are slowly working towards straightening and ultimately improving Elias. There has just been need after need, find after find and decision after decision. What has kept us from completely going nuts is Elias himself. In his usual fashion he always has a way of making those overwhelming and frustrating moments melt away. Even with all the changes he remains the same in spirit. That is our beacon. His amazing little attitude and fighting spirit. No matter where we have to stray to advocate or struggle with decisions he always brings us back to where we should be. God love him for that!
During the last 24 hours of our stay Elias on three occasions drop his oxygen sats into the low 80’s . He was always asleep when this would happen and would hover there. Usually he would dip and come back up quickly. Each time the would give him positive pressure, as they referred to it, but it was also attached to oxygen. We asked the question which was helping the positive pressure or the O2. That could not be answered. We brought this up because they were beginning to discuss placing Elias on Si-Pap. This is what began the flurry of conversations towards us not being comfortable with all the changes that were occurring since we placed the new trach size. It was quickly decided that Si-Pap was not something that was necessary for now, but might be down the road if he continued this behavior. What they think is happening is Elias has distal (meaning below) tracheomalacia with anterior compression with concern for vascular compression. This basically means that his airway is floppy below the trach tube. It is at times narrowing when Elias is relaxed in deep sleep and positive pressure (or O2) helps keep it open when he can not to it himself. However they agreed that Elias has not needed it prior to this so they were willing to accept it as an isolated thing, but will continue to monitor and take action if necessary. So far here at home this problem has not resurfaced. We also still are not 100% on the same page with them about the increased baseline heart rate. Although we do have a better understanding of each others side for concern and non action. The point was well made saying that given Elias is so complex and spent so much time in the hospital this is the only reason we are even aware of his “baseline heart rate.” A child’s normally would not be known and since Elias still falls in an acceptable range they saw no need for concern. That at least explains their thinking on this rather than the way we had been perceiving their response being to acknowledge yet discount it as not important.
Finally, the open surgical would seems to be doing well. We are packing it twice a day and changing the gauze covering it several times a day. It still is very odd to see and we will be glad when we revisit the surgeon next week to hopefully reclose it. Elias does fairly well with the packing changed. He is obviously in discomfort and maybe some pain. Usually though within a few minutes of completion he is better. It has been a great few days at home so far. Elias has generally been very happy and playful. Is enjoying looking around at everything and laughing at Rusty, our dog. It amazes us how he can be so upbeat after all this, but God knows we love it. We were able to enjoy sitting outside for a little while and Elias really liked that. Then it was time for Football with Mommy & Daddy which he loves. He was craning his neck as we walked into the den to see the game. We think it is the symmetry of colors and fast movement that draws his attention, but it certainly captures him. This was a long update and there is more I could share, but I think for now this brings everyone up to speed with what has been and is going on right now. Thank you all for your thoughts and prayers.