Busy and Momentous

So many things to update on today. The last 24 hours have been very hectic and eventful, even more so than usual. Yesterday evening we had a destiny with an ER visit. Elias’ NJ tube had slid out about 15cm. We  thought we had been doing a good job with the taping, but apparently not. It was not entirely our fault, Elias has this issue with things not sticking to his skin, be it leads, ostomy bags, tape, etc. He sweats a lot and that moisture does not help either. It was the worst day of all days to happen. Katharine had a 10 work day that ran overtime and had started at 5am. She did not get home until around pm. The night before was rough as the pulse ox alarm kept sounding at 100% ugh, along with the suctioning Elias required. So the sleep was certainly lacking with that and the extra early start. Fortunately for us this was a pretty quick ER visit. Well by our standards, only 3 1/2 hours! We were afraid they might not be able to place the tube again as Elias has a history of causing trouble with NJ tubes. God was watching over us and it was a smooth in and done. This morning when Elias woke up his tape needed to be redone desperately. We were lucky it had not slipped out again. Then after just a few hours we checked again and it was coming off. So we did it again. Hopefully, it will last until 9 am tomorrow without incident. He has surgery tomorrow for the central line placement. We really cannot afford for Elias to lose any opportunity for hydration to keep his blood vessels open wide and 9am is when we stop giving him Pedialyte before the surgery.

On to the subject of surgery. It is still unclear if we will be admitted or not. There is a 98% chance we will and it seems a failed central line placement would be the only route home. They do have us as outpatient only and it appears to be a game time decision post surgery. It is easier to get patients into surgery when they are inpatient versus out so it seems to hinge around availability. We really need to get the G-tube resolved ASAP. We are not too confident that the NJ is going to continue to play nice as Elias is becoming more and more annoyed with it. We also spoke with Beth, one of the nurse coordinators with the FA clinic. She called to follow up on Elias as they saw he came into the ER (how awesome is that) and let us know that Dr. Mehta (Elias’ BMT doctor) talked with Dr. Rutter (ENT) & Dr. Falcone (surgery) personally this morning about the plan for Elias. She wanted them to pass on to us that she was up to date on Elias and very comfortable with the plan. It is amazing how involved they are without really being in the picture. They are very devoted to their patients and it reflects in their work, attitudes, and compassion. They are an invaluable resource to us and all FA families. They have come to visit Elias in his room and are always there to help out with any issues and answer questions. In other words, they are simply amazing.

I have saved the best part of the update for last. Our little man today did something for the first time and hopefully we will be able to build on it more and more in a short amount of time. After taping his NJ tube for the second time today Mommy sat Elias up to get him to calm down. He was very very angry. At some point Mommy let go of Elias as she steadied and supported him. I was behind ready to catch him if he fell backwards or to either side. Wouldn’t you know it, he was steady as anything sitting up all by himself. We were so excited watching him and surprised by the lack of wobble. He managed to stay up for almost 2 minutes before he got a little shaky possibly from getting tired with the more labored breathing. we have not been able to get a repeat out of him yet, but it was a huge step forward and I think he will do it more and more on his own. 

As always we will keep everyone updated on Facebook and via twitter through out the day.  Twitter updates also post here on the left side bar. Thank you all for the thoughts and prayers tomorrow. Success tomorrow is crucial to move forward with the other two surgeries and then we will have to reevaluate when the next round of operations come about.