Well we have a plan, that is the good news. The not so good news is it appears we are here for an estimated two more weeks. The plan is to go into surgery on Thursday morning, close the existing stoma and track, then place a new stoma and G-tube. Hopefully in the correct place this time. Apparently from our conversation with the surgeon part of the hold up with proceeding was someone along the way got the bright idea to combine this with the pull-thru surgery. That is the surgery to repair the imperforate anus. Not sure where that came from as this was the first we had heard of that. Fortunately before we could object to this notion the surgeon himself felt it was absurd, but understood the idea of combining surgeries to minimize invasion and sedation. There is simply too much work up that needs to be done for that pre-surgery which would take an additional three to five days not to mention the added time for the recovery. We were pleased he has squashed this plan before it even gained momentum. We are still waiting for ENT & Pulmonology to weigh in on the trach issue. Some of that is scheduling issues in connecting with the big doctors who have very tight clinic schedules. The other is the true team concept that exist where everyone comes together and creates a plan. There is not a consensus on how to handle things so the debate continues. We were told we will see Dr. Rutter tomorrow to discuss where they are or what decision has been made. While it was deflating from a morale aspect to hear how much longer we could be here we also have learned to manage in this environment. We have spent more days in the hospital with Elias than we have at home and we know that this is not going to change anytime soon. We can either embrace it or allow it to consume us. We try to make the best of it and of course you have to advocate. It does get exhausting and at times patience is limited due to that.
The attending GI doctor came in this morning to try and streamline some communication issues that were occurring mainly due to the switching of services and shifting priorities. It was a refreshing and positive approach for them to come to us with the problem before we really recognized it and became frustrated. Yesterday, with no update from any of the services at 9:30 we were told by a resident for GI that if surgery had not been by yet then we would probably hear from them tomorrow, maybe in the morning. Her exact words and apparently she was not privy to that information with communication between the services. I think that is what helps make this hospital function so well and with such positive review. Do issues happen here , yes. Is everything perfect, no. The one thing they do understand and respect very much is the family’s desire to be involved and stay informed. That doesn’t always happen exactly as they want it to and at times they do get tunnel vision and forget. They do however, see it for what it is, recognize it and rather than cover it up or ignore they involve the family in the resolution process. We also were flooded with apologies over our first impression of the inpatient side to the hospital. Last Wednesday when were admitted from the PACU we were sent to a unit that refused us when we were literally 50 feet from the room. It came across as a very rude confrontation that ended up send us to another unit and tons of apologies and embarrassment by the PACU nurses. The reason we were shooed away was there is no respiratory therapist assigned to the floor and Elias needed to much suctioning support which was more than they could handle. Those where the words of the nurse in charge in a very unfriendly tone, mainly to the PACU nurse, but we were standing right there in the hallway outside other patient’s rooms with a few parents standing in the hall as well. We actually dismissed it and chose to look at it as concern for Elias safety based on his needs. That was until yesterday when they told us they were moving us there. I explained that was the unit that refused us initially and wanted to know why we were trying to be sent back. That apparently did not go over well. I asked to speak to the charge nurse to explain my concern. The unit that refused us said why they did not want Elias that night and it was perfectly reasonable, but things had not changed, so why should I feel comfortable with the care he would get down there when they were the ones who said they could not care for him. It was a no brainer I just did not want a repeat experience. Well the floor management would not address my concern for some reason and were avoiding me. Elias’ alarms were going off, but everyone stopped responding. It was like I had flipped the invisible switch by questioning something that concerned care for my son, and a simple question at that. I was getting furious and it escalated to the clinical manager. We discussed my concern and after some looking into it found it had been reported by a staff member last week. So it turned into them questioning me in detail about the events. The end results was several higher management visits personally apologizing for everything. The funny thing is I was not even bringing that issue up only the reason we were rejected. They pressed the issue. They also had the nurse that was in charge that night speak with us and the air was cleared. Several more people came by today also to express their apologies and see if we were being cared for properly. The point is they take it very seriously. While it might not always happen the way they want they do what they need to and make it right. Even when you are not trying to.
Elias today has been rather weak and off. He is very tired and having some secretion issues along with some violent hacking coughing fits. We think those are almost him gagging on the NJ tube, but are not sure. It is just one of those days and of course there are storms coming in the area. Something that with all the issues we have yet to be able to address. The hearing issue has also had to be moved to the back burner. It is days like today that frustrate us more than anything. Not because anyone did anything that upset us, but that there are so many of Elias’ issues that are more important than another, realistically. As parents though many of them carry equal weight. However, medical science focuses on the highest priority towards sustaining life and works down. That makes sense, but there are some things like the hearing that unfortunately covered by the same doctors that focus on the airway. So for them it is also a contradiction, but the life sustaining aspect of the airway makes that the main issue. When we hear anything more we will update again. Keep Elias in your thoughts and prayers on Thursday as we prepare yet again for another surgery. Thank you all for the support and words of comfort. They always help get through these exhausting times.