Samuel Medical Update

Ok, here is the latest...and I'm glad to say it's GOOD NEWS!!!!The short, nonmedical version:1) Good appointment. Samuel is able to eat quicker, and we're moving fwd with getting him to eat more via mouth. Possibly off the tube feedings by Aug, may remove tube this fall/winter.We are just so happy. Last November seems like it was years ago. Before this started, we couldn't imagine going through all this, and we couldn't imagine what it would be like for Samuel either. The drs. had told us this would only be 6-8 weeks, though my heart never really thought that was true. Lots of ups and downs along the way, but it seems like we might see the end of this someday soonish!!!! As we arrived at the hospital today, I saw the art and wall hangings that have become to familiar. I've even started to notice how often they change their marketing banners. It was strange, the first time I saw these halls, I was just starting my residency and was very impressed by the state of the art care and the art work on the walls. I was proud that I'd be walking those halls every day. The first time I saw the halls at night, however, my feelings shifted. The water falls, biblical art and pictures of the famed daughters of charity had an eerie feel (honestly, the pictures of the famed nuns were eerie in the daylight too!). The halls were quiet, lonely and gave me time to become humble and fearful. It was still a fine facility, but I had a new appreciation for the families I had cared for. How they could get lost in the system, feel alone, wonder how long they would be there, wonder if anyone really understood how awful to was to need these halls. I walked the halls after learning Samuel would need surg. We watched the decorations change from Halloween, to Thanksgiving, to Christmas. I saw Obama elected president in this place. We had a thankgiving meal donated by a family I assume spent many holidays in the hospital. Today, I'm still thankful for these halls and the care they provide are so close to home. But, as we left today, I thought, "if I never see the inside of St. V's children's hospital again, i'll be thrilled." This day may come sooner than I first thought.The longer medical version:Samuel has been cleared to go to bolice feedings three times a day. What this means: We've been using a machine to feed Samuel through the tube. The fastest the machine could run was 400 ml an hour (or, 7 oz per half hour). Samuel is now ready to try to eat 7 oz in 15 minutes (via tube). This is good news because he is able to safey take in more food at a faster rate.Samuel is able to eat a total of 200 ml of honey thick liquid via mouth. This includes formula, oatmeal, rice cereal, baby food etc. This means that his weight gain continues to be strong and his swallowing strong enough to take in more food via mouth. The goal is to get him eating all his food via mouth...so we're 1/4 of the way there (600 ml via tube and 200 ml via mouth).We can continue to work with 1st Steps (our speech path and PT person) to get him used to using him mouth to eat. Odd as it sounds, this is a skill that takes a lot of practice. Because he hasn't eaten via mouth much, he has to learn this skill again. The Speech path. will work with him to get nectar thick foods down safe, then we'll move to thickened milk (maybe after our June dr. apt). We will also add a nutrition specialist to our 1st Steps team to make sure he is getting a balanced diet that meets his indiv. needs.Samuel has also been able to stop using his breathing treatments. We were using Pulmacourt 2 X daily at .05 each dose. We've weaned him down and now we're all clear. We'll have to watch and make sure he'll be ok when the weather turns cold again. When does the tube come out? We have an apt in June and another apt in August. The goal would be to get Samuel on nectar thick food 100% by August. If we can do this, and it seems like he is not having problems, we could *maybe* schedule a surg to get his tube removed in the fall or winter. The dr. won't remove the tube until Samuel has been eating via mouth 100% for 2 months without problems. They think this *maybe* possible by fall/winter. We've also been given the ok to reduce one of his meds, posib. remove the 1 med in the next month (regalin, which helps with getting food through his system)We are so very excited.