Dilemma

Things have been pretty good the last couple of days. Max has recovered well from his surgery, although I think the Tylenol is wearing off a little bit...he was pretty cranky tonight. The straightening of the bowel seems to have really moved some things along for him. I personally changed 3 DIRTY diapers in about 45 minutes last night...all of them during a "photo shoot!!" Max's lungs seem to have really responded to the surgery as well. His blood gases have been great the last few days and they have been able to turn him down to a pressure of 23 on the vent. I cannot remember the last time he was that low, and his gases are still looking very good!! We are so excited about the improvements he is making on the ventilator, but we get the feeling the doctors don't want us to get the idea that maybe he won't need a trake. The whole "trake situation" continues to weigh very heavily on our hearts. I talked with an Ear, Nose and Throat doctor the other day (I will call him an ENT going forward). He was examining Max to see how he thought his throat looked in anticipation of the trake surgery. He said that he would be able to do the surgery in the next week or two. That seems like a little quicker than we thought, and we are just torn. He has been doing so well on the vent that we would want to give him a shot at getting off the vent by himself. Even if he did get himself off the vent, he could be on CPAP for a while after that. The trake would allow him to come home on either a vent or the CPAP, but with a lot of strings attached. If he were to come home on a ventilator, we would have to have a back-up generator installed at our house in case the power went out, a respiratory nurse would live in our house for 12-hours a day, mostly at night, we would have to buy a van because a trained person needs to be close enough to Max to switch out or unplug his trake if necessary, and it would almost certainly be in for a year or two, which would likely delay speech, etc. We don't want Max to sit in the hospital for another 4-6 months because we don't want the trake, but at the same time we believe that God can heal his lungs. We are praying that is what is happening right now with the good vent changes. The doctors say that is unlikely, but we believe. Like the woman in who touched Jesus cloak and was healed, not because she touched Jesus, but because she believed He could heal her.

Wes has been doing well. I mentioned that we got some new info on Wes in the last post, so here it is. I am afraid I may have led people to believe it was good news, but that really isn't the case. Wes was seen by a pulmonologist (lung doctor who we will likely be following up with for the next 600-years when the boys leave the NICU) on Tuesday. She noted that Wes has a lot of fluid in his upper lungs and that could be causing his labored breathing. They have started Wes on aldactazide (a drug we are very familiar with because of his brother), which is a diuretic that should help him "move" additional fluids without throwing his electrolytes all off. The last time Wes was on this drug he had a difficult time gaining weight, so we are praying that will not be the case this time. The pulmonoligist also suggested that Wes might have Cystic Fibrosis. CF is an incurable disease that affects the lungs and intestines. Our nephew Luke has CF, and after we found that out (almost 3-years ago), Kate and I both had our blood tested to see if we were carriers. Kate was, I was not, i.e. the likelihood of our children having the disease was about on in a million. On top of that, the boys had their blood tested at birth and they look for any mutations, neither of the boys had the CF mutation. We are confused as to how Wes could have CF, and it was just a theory, but not a theory we are real keen on. WE have not learned much since that consultation with the pulmonolgist, and we will keep everyone posted as we learn more. Indications are that there are more tests to come because there are 1,500 different strains of CF.