Today we went to Children’s for an appointment at the vent clinic. This is a clinic for children who either have a trach vent or bi-pap. We met with the doctors there for a while and have a lot to think about after the visit. One of the things that came up during this visit was possibly switching Benjamin’s G-tube to a J-tube. The difference between the two is that with the G-tube the food goes into the stomach and with the J-tube the food goes into the intestine. The reason for possibly switching him to a J-tube is because his lungs are so bad and they are wondering if he has been silently aspirating all this time. Because he is 4 years old and is still on oxygen this is a big concern. Lungs grow new tissue until about 8-9 years of age (did you know that?). Since he only has 4 years left to grow new lung tissue we want to maximize the benefit of the new growth. Since his baby lungs were so scarred when Benjamin was born, his 3 ½ years of growing new lung should have helped him by now. But if he has been silently aspirating all this time then the new growth would have been affected. Which could explain why he is still on oxygen and why RSV hit him this hard. Unfortunately there is no way to test whether he is silently aspirating. So we have to decide whether to go ahead with a trial of a J-tube to see if it will help his lungs. The only down side to this is that 1) I can’t change the J-tube like I would the G-tube so if it comes out, this means a trip to Children’s to get it reinserted & 2) Benjamin would have to be fed continuously 24 hrs a day. They did say that he could probably have 6 hrs of a break but not all at once. But if this will help his lungs we are willing to try it. His lungs have significant damage from the RSV. We were told that if an adult’s lungs had this kind of damage that adult would not be alive. But because his lungs are growing, they can repair themselves.
The bi-pap is going very well. We are quite comfortable with it now. Benjamin doesn’t like having it put on him but once it’s on he’s ok with it. He sleeps really well now. I’m glad that his nightmare stage is over. It’s really hard not knowing if he remembers the ECMO or not. We’ve been told that he probably doesn’t remember but yet he might. I’m just glad he’s adjusting to being at home now. Yesterday was a really good day for him- scooting onto the deck, scooting back inside watching Daddy put up some light fixtures, scooting back outside, etc. He’s not as fast as he used to be but his strength is definitely coming back.
Yesterday we had a family day at home:) Gary put up some new light fixtures. I was so happy to see them up. I’ve been wanting a light on our stairway for years now and now we finally figured out how to do it and had the time to do it. With an older home, our wiring is a bit weird. Trying to find the right wires in the attic and then finding out they come down from down below and having to come up with a different plan is a bit of a challenge. But we figured it out. I guess that’s why they say two heads is better than one.