I got Aidan home yesterday afternoon around 3pm. Dr. Black diagnosed him with tracheitis and constipation. Basically, Aidan has an infection around his trach site and it's been causing the increased secretions, combined with seasonal allergies, the extra mucous is collecting in his tummy and making him sick. He's been put on Augmentin for that.
Now with the constipation. We've been having problems with that since he was put on the formula, but a lot of the meds he is on add to the problem. We've got him on colace for that.
I took Aidan to his primary doctor this morning, and she gave me a script for Zyrtec, for the allergies and Zantac for the reflux problem because he is still spiting up or vomiting occasionally after eating.
His feedings have also changed and we've now dropped to only 5 feedings a day but we went up on the volume to work in dropped feeding and we're supposed to increase the volume gradually over the next week or so. The doctors and nutritionists think that Aidan needs more calories, so we'll see how he does on their schedule, but I don't want him to gain back up to almost 50 pounds either.
I'd like to get away from using the formula as the bulk of his diet anyway. That stuff is NASTY! There isn't any reason why I can't blend up his foods or make my own "formula" that has real food and vitamins in it that work for him and his needs. I'm still hoping that one day Aidan will be able to eat normal foods by mouth and not through a tube in his belly, although, I'm okay with the tube for as long as he needs it.
The trach is another story altogether. Aidan is able to breathe on his own when the trach is capped. He is able to swallow, and he coughs... really well. I'd really like to see the trach removed by the end of the summer. I'm asking you all to pray that Aidan continues to do well and is able to be decannulized by then too. I think it is just a source of irritation to him, both in terms of his health and his overall mood.
The hyperbarics resumed today. Aidan did really well, as he has been doing since we started. I went in with him today and he fell asleep while I watched a movie and kept an eye on him. I am so appreciative of everything that Dr. Rebecca is doing for us and for Aidan. For us to be able to do 2 sessions a day, we have to drive almost 3 hours a day to and from her location, so she has been working to help us raise the funds so that we can get our own hyperbaric chamber at home. I was absolutely floored by the cost of one of these units as it seems like just like everything else Aidan needs it's extremely expensive. We could buy a brand new vehicle or put a down payment on a house for what one of these things costs.
Other things that are going on right now--Russell's mom and brother are on their way here to visit as we speak, and should arrive sometime tomorrow evening. Our van has been acting goofy. It's a 2005 but it's got a lot of miles on it and today I felt what I think is the transmission starting to slip. The blower to the a/c fan in the front went out last summer and then the locks stopped working. We've been able to deal with that, but I'm just praying that the tranny doesn't crater on us. That would really be bad since it is our only vehicle. We're going to have to find another vehicle once Russell finds a job (which I hope is soon.) And finally, I'm looking at taking an online course in medical transcription so that I can work from home. Anything right now to help bring in more income will help, but I have to come up with the $1800 to pay for the course. I don't want to take out any loans right now (and I don't think I could even if I wanted to.) Anyway- we shall see how things go. Right now the most important thing is taking care of the boys.
Please pray that Russell finds a job soon, that we are able to raise the remaining funds for the hyperbaric chamber, that Aidan's trach will be able to be removed in the near future and that he continues to progress. Thanks to everyone for your love and support and the many, many prayers. We are so grateful to you all!