Today was one of those days where you blink and think...what happened? Everything was moving at such a fast pace that there was hardly any time to reflect on the moments that had just past. Having time to sit down and collect our thoughts was a great relief. As we reported earlier this morning, Elias' G-tube fell out twice yesterday. Well, it fell out again overnight :sigh: This time the stoma had to be dilated to get the tube back in place. Then, just after the family meeting, which we will discuss in a moment, it came out for a fourth time overall, and third time for this tube in 24 hours. So again it was reinserted. After the meeting Elias was still awake, and had been since 4 am. It was now around 11:30 and he felt very hot. We took his temperature which was 100.8. Thirty minutes later we checked it again, it was 101.2, so we told his nurse. We also noticed some dried secretions in his trach tube, which is not overly alarming, except these had a reddish tint to it. This was consistent to the pink to red tint we had been intermittently observing over the weekend as we suctioned, but never large amounts or with regularity. The nurse from the weekend did not feel it was anything to be concerned with since it was not prevalent all the time. Apparently, the doctors were never notified about this either. We will elaborate during the family meeting review. With all of this information coupled with the G-tube being manipulated so much, a full blood panel (culture, CRP, CBC) was ordered, along with chest x-rays, urine catheter culture, & sputum culture ( a test to detect and identify bacteria or fungi that are infecting the lungs or breathing passages). The three cultures will take a few days to produce definitive results, with a sneak peak at 24 hours, but the CBC & CRP results were not overly impressive. Meaning that the CBC seemed normal and the CRP was slightly elevated, but a repeat lab will be drawn early tomorrow morning to look at its trend, up or down. His chest x-ray was normal too. We will update more on all of this once we know more. We just certainly hope Elias is not getting sick.
The purpose of this family meeting was to determine what was needed both medically by Elias and educationally by us to get to discharge. Other than the latest development with his fever, and of course the outstanding and now infamous G-tube, Elias is basically medically ready to come home. The doctors obviously want to continue to see weight gain during this time frame as well. When it came time to the surgeon's portion it was segued in with the comment, "would you care to discuss the G-tube." Of course, Dr. Stewart smiled and comically said, " No, No I wouldn't!" We all chuckled and returned to business. Basically, the past 24 hours have put a little kink in the plans, but possibly have given him some ideas on what to do next. He does want to watch how the one that is in acts over the next 48-72 hours, before making a final decision on what type of tube, how to secure it, and benefits. We all agreed that it would be so much easier and less pressure if the darn thing would just fall out and we couldn't get it back in, leaving us no other alternative but to redo the surgery. He just can not in his head ethically do an elective surgery on Elias. As he puts it, "you are just asking for trouble when you do that." So the G-tube saga lives on for yet another chapter in a book that makes War & Peace seem like a short story. They also discussed attempting the compressed feeds over 20 hours, leaving him 4 hours free from the feeding pump! That will most likely be what he goes home on with continued work on bolus feeds from home. We also brought up something we had noticed over the last few days regarding the trach and Elias breathing. As mentioned, we have witnessed pink to red tint to his secretions along with what seems to be miniscule positional breathing issues. We were discussing this with the reasoning behind the discontinuing of his Flo-Vent breathing treatment, which we were under the impression he would be going home with. We were concerned that the two were related somehow. Of course they were not aware of this, but did seemed concerned, which bothered us because his nurse the days we began seeing them dispelled them so quickly and neglected to communicate the concern on his chart. We spent some time discussing potential reasons such as, irritation from suction, granulation tissue, or other build up around the site. A close eye will be watched to see if this continues to randomly appear. If so, a bronchoscopy may be performed to check the trachea for problems. The final portion of the meeting was about the medical assistance and where things stood. Unfortunately, the letter we needed held up our application from being processed until yesterday, so it might take 10 more days for results. We submitted the application on September 9th, got them the other "oops we forgot to tell you" documents on the 10th and did not find out about the letter until the 17th. So my question was what the heck was being done from the 10-17th?
I will not rant, I will not rant, I will not rant, I will not rant, I will not rant, I will not rant, I will not rant, I will not rant, I will not rant. Moving on...........So this is still obviously pending, but overall they feel as though the remaining education requirements and medical issues can be resolved within a two week time frame. So the good news in all of this, and we saved the best for last, assuming that everything stays on course and we get the medical assistance approve within the next 10 days, it is conceivably possible that Elias could come home with the target date being....October 7, 2008. It would probably be late that afternoon, so our first full day home with him could be our wedding anniversary, October 8th!! What a wonderful anniversary present that would be, after 5 months and 7 days in the NICU!! We are trying not to get too excited because a lot of outside influences with home care stuff have to also happen in this time frame, but can not even begin until we get the medical assistance number. That, if anything, most likely will be the bent cog in the wheel....well maybe the G-tu.....Nah we won't even think it!!! We will obviously let everyone know as soon as we know for certain on a day, but realistically, while we hope for the best, there is too much beyond our control. With that said though, it is very nice to know that we are ever so close to finishing this marathon. One that we wish we could prevent anyone in the world from having to endure. We will keep you all posted, as always. Thank you all for your thoughts, prayers, and showing of support. Every little comment, email, phone call, and card means so much more than you all could ever realize. Elias has been so amazing through this whole ordeal, most of the time giving us the courage we needed. It is so nice to finally have the goal to reach next be HOME!!