First of all, thank you all for the amazing show of support, particularly from our many friends from the VACTERL network. You are all amazing people with warm hearts. Things here have been busy. We had the home medical supplies and equipment delivered to our home today. It just kept coming and coming and coming in the door. We were slightly amazed by the amount of equipment and supplies we are going to have, but from what we can tell we will have no trouble getting it all to fit nicely in Elias nursery.
As for coming home on Tuesday, that remains up in the air. Two key issues are likely to postpone discharge. The first is nursing....This has been quite a battle. We have had five scheduled orientations with nurses and only two have actually shown up. Two reported in as ill and unable to show and another said that the security guard told her visiting hours were over. That is not likely because the security guard at the desk knew we were expecting someone first of all. Secondly, there are no visiting hours in the NICU. While we liked the two nurses we did meet with, it is not enough to feel comfortable with to start, especially with our track record thus far. The second issue is Elias tolerating the HME for his trach...which he is not doing very well. They did get one type that seemed to work for him, but only had one, and it fell on the floor, so trash it became. They scrambled all day Thursday and Friday trying to get another with no luck. The goal is 4 hours, he had lasted up to only 1 hour on Tuesday, but has not been able to work with it since. So then we were told the type we needed would be in our home supply delivery and to bring one in. Well, they delivered a different type closer to what Elias was not tolerating before. We tried today, but he only lasted 5 minutes. This obviously presents a problem and one that will need to be addressed. It is very frustrating and we all know that we need that like we need another hole in the head. This discharge date just feels like it is slipping away, and maybe it would better if it did take another week at this point.
One of Elias nurses, Sally that took care of him last night brought us a good-bye gift for Elias. It is a hand woven outfit, with a cute little hat and booties. The best part of the gift is that they made it to fit Elias' arms exactly! That was such a sweet touch, and something we will always remember. Thank you Sally! We will be sure to get a picture of him in it very soon!
Now, we will address the question on everyone's mind right now. How are we doing? Honestly, the short answer is we don't know yet. There has been so many other things going on the last 2-3 days that we have not really had a chance to really think about or discuss it ourselves, except for a few moments here and there. It is still very numbing to think about. As usual we are facing the storm with every ounce of courage we have for Elias sake. We are holding each other up during the day and crying in each others arms to sleep at night. We undoubtedly agree that our love, strong marriage, and commitment to our family is what is keeping our heads above water. I think about Elias and he is still the same amazingly strong, and always happy baby. That has not changed and it will not change. I think what is so difficult to accept is what he will go through for the rest of his life. When he just had VACTERL, we embraced the fact that the first several years would be difficult, but then he would go on to have a fairly normal childhood. He would not have memories of all the surgeries and procedures, the hospital stays, and painful times. Now he will have to continue to endure screening for cancers, bone marrow biopsies, and other medical challenges. It just seems so unfair that he has to go through all of this. While we are certain God has an amazing plan and purpose for him, it doesn't provide quite the comfort a parent wants to give for his pain and potential suffering. I think that after we talk with the hematologist, hopefully Monday, we might be able to form some coherent thoughts on how well we are doing with this new information. We are still walking around in a fog, if you will, not really in tune with what all is going on. Some of you have asked, so we thought we would share what little feeling we have thus far about this. I know most of you were as shocked as we were and are just not sure what to say or do, but we need the support right now in what every form we can get. Just when we thought things were about brighten up, we are picking ourselves up again from the sucker punch called life!! But as every great fighter always does, we are back up and taking it all on again. Please continue to pray for Elias and that all his angels protect him.