Two weeks ago, Lochlan had a nasty stomach bug which was awful because he lost at least two pounds. With the support of Lochlan's amazing pediatrician and GI doc, we were able to keep him out of the hospital. Considering it took him six months to gain two pounds, I was beyond upset. He looked so sickly and thin that it hurt my heart every time I looked at him. Once he recovered, he must have been so hungry that he finally had the motivation to EAT! He has been an apple, puff, cheese, cheerio, and popcorn eating machine for the past week. Yes, the same child that will not let baby food touch his lips. It truly feels like a miracle because I really thought that he would not eat until he got his transplant. He still has a long way to go and he will need his feeding tube for a while after his transplant, but this week has quieted my fears that something is wrong in Lochlan's throat. Our next goal is to get him to chew, but I think that will come.
In other news: Lochlan's nephrologist dropped a bomb and suggested that we should start thinking about dialysis because he is having a hard time gaining weight and growing. While we were in Boston, they felt that if we could find a live donor, we could transplant before dialysis. We are currently looking for an adult donor with O blood type in excellent health that feels strongly about helping Lochlan. There are two possible donors so far, but because the transplant center does everything to protect the donor, it is hard to find someone that passes all of the health tests. Initial blood testing will happen for all of the possible donors in a local lab at the same time. I will write an extensive post after I do all of my research because the details of being a live organ donor are interesting.
After such an enjoyable uneventful holiday season, we are starting to make our way back into planning for the future. The future is really hard to think about because dialysis and transplant stand in the way like a big speed bump. Seriously, they stand in the way of school, vacations, jobs, house projects and everything else. Thanks to some really kind people from the Saratoga Springs Fire Department and a fireman's legacy, we have a great event to look forward to. It involves a family barbecue, a fundraiser for Lochlan, and a motorcycle ride on September 19th. I will post more details when they become available.
Lochlan will have an MRI on March 18th to see if his spine is tethered. I want to hope that it will be good news, but realistically it is likely that he will need some sort of surgery on his spine. There is no news on Lochlan's heart because his insurance does not participate with the one local pediatric cardiology group. With everything going on, I have been unable to give it my mama bear's all to get it covered. Hopefully this week we can get the gap exception to make an appointment. Maybe between arguing with Caremark over Lochlan's important medictions, I will get sassy enough to get it done.
Sometimes all of this feels like running a marathon with two toddlers on my back, and when I think I want to just give up, all of you special people pick us up and carry us until we are able to run again. I know for sure that we could not do it on our own, so we thank everyone that reads this and cheers Lochlan and our family on.
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