So, it's been a long and busy weekend trying to juggle Easter weekend festivities with hospital visits and caring for Ethan. This is getting a bit repetitive at this point, but a giant thank you to all of you who have helped us -- which feels like most of the Phoenix valley at this point and a big chunk of the rest of the country. You have all been amazing, and people I don't even know have dedicated their time and efforts, prayers, gifts, meals, and love, and it really continues to amaze me how much everyone has cared for us in every way.
Robin's parents were able to cover for Robin on Saturday so that she could make a surprise visit home to paint Easter eggs and spend some time with the family -- and that was really special. I was able to cover for her on Saturday evening so that she could go out to dinner with the boys and her parents. Knowing that we wouldn't all be together for Easter was a bit overwhelming, but we made the most of what we were given, and the boys all enjoyed their Easter immensely. The nursing staff has been great and they had a heart for our situation, so this afternoon they "unhooked" Ethan and turned off his baby alarm and let us "wander" to the lobby of the hospital where the boys could see him. This made everyone's day, particularly for Ethan, who was laughing, clapping, waving and smiling at his brothers. We were able to get some family Easter pics in, albeit in the lobby of the hospital, and I've attached a couple of them to this email.
1. Ethan continued to lose weight until Saturday. On Saturday and today, he hasn't lost any weight. That's the good news. The bad news is that he hasn't gained any either, but we'll take what we can get.
2. In concert with not losing weight, he has been staying awake for longer periods, and as always, is happy as a clam. The nurses love him -- whenever they come in he waves and gives them a big smile. He doesn't spend too much time fussing -- which has been a blessing for both he and Robin (and our roommates). He still is far short of the time he should be staying awake, but it seems like we're making progress even though there is still no diagnosis.
3. We ended up getting an echocardiogram, and it came back "mostly" normal. Ethan has an extra artery, but we're told that this is not all that uncommon and really affects nothing and has nothing to do with his issues. I guess if we were all to be scanned and prodded as much as Ethan has been, we'd all find interesting things about ourselves!
4. We're still waiting the results of the genetic/chromosomal tests . . . . .
5. If he can gain some weight, we will go to bolus feeding -- giving him 6 ounces of food at a time 4-5 times per day through his feeding tube instead of on a 24 hour drip.
6. There is some talk that he may be experiencing reflux aspiration -- which means he refluxes his food, but only high enough to then aspirate on it (goes into lungs). This is another thing to look at, but it would require his third general anesthesia and a bronchoscopy (tubing into his airways and gathering some biopsies) to determine if he's aspirating. They want to get him on bolus feeding to see his reflux results before doing that, so there is a little tail-chasing here to get him to gain weight.
7. They came in tonight to say that they will be doing more blood draws, but we're still trying to figure out looking for what. We didn't know there was any other way to look at his blood, but they're getting creative at this point. The doctors have conferred and they have admitted that this is challenging to them, but that there are a few avenues to still explore.
8. His second IV line blew today as well, and he will need another. Bummer. His arms are pretty dotted up, and he has a skin burn from the tape adhesive.
That's what we're looking at for the next several days. So what are we thankful for? Here's the short list:
1. Ethan's heart, brain and vital organs continue to look and work great, and he even has an extra artery for spare parts!
2. His spirit is amazing, and his smile and laugh is contagious.
3. All of you! I will not be able to say it enough, nor will I stop trying to do so. THANK YOU ALL.
4. Robin!!! An unbelievable mother and wife, she has been an absolute pillar of strength throughout this. If I was spending every night on that "couch" for 15 nights straight, these emails would be more focused on how I felt than on how Ethan was doing! She never complains, has taken her two rounds of chemotherapy in the hospital room, and rarely leaves Ethan's side. There is no better mommy than her!
I never thought that I would measure the success of my children in mere ounces, yet we are now measuring daily weight differences of Ethan in grams. I am continually reminded of two things: 1) Life is precious and is sustained by God alone; and 2) I never really knew how powerful the love of friends, family, church, co-workers, and neighbors was until witnessing everyone single-mindedly thinking of our boy and family. You know it's there, but to witness it in action is a whole different thing.
So that will conclude my Easter ramblings. I will update again in a few days, or if circumstances warrant I will send out sooner.
Matt, Robin, Jacob, Nicholas, Andrew and Ethan