Here We Go Again...Again

Once again, it has been a long time since we posted an update. Although this is the second one in the same day...does that count for anything? No? Fine.

As Kate alluded to, it has been a long week. You faithful followers will no doubt recall a number of weeks ago when the docs were really pushing us to do a tracheostomy for Max. That was when he was still on the ventilator and no one thought we would be where we are today. Kate and I were under the impression that the trach talk was purely so that Max could come home (kids can come home even on a ventilator if it is by way of a trach). After Max's miraculous improvement on the vent and subsequent move to the CPAP, the talk kind of died down. Over the last week, Max has had a series of poor gases. His CO2 was in the high 60s for three days in a row. High 60s used to be great news back when Max was preterm and on the jet ventilator, but the standards have changed now that he is 6-weeks post term and growing like a bean sprout. The indication from the poor gases is that Max is being under-ventilated. In order for him to be properly ventilated, it means a move back to the ventilator, it looks like CPAP just isn't doing enough. As Kate mentioned, there also seems to be some stress to Max's heart. As we all know, the right side of the heart is designed to pump blood to the lungs for oxygenation, and the left side handles the movement of blood to the rest of the body. As such, the blood pressure on the right side of the heart is much less than the pressure created by the left side, which is the systemic blood pressure (what the doctors measure with that air bag thing around your arm). When someones lungs are as sick as Max's, it is not uncommon for the arteries to be constricted, or the lungs to have any host of other ailments that might make the flow of blood to the lungs difficult. As we all remember from 5th grade gym class, the more a muscle works, the larger it gets. This is great if you are talking about Lou Ferrigno's biceps, but the right side of the heart is not meant to be very muscular. Long story short, Max has what is called Pulmonary Hypertension of PH (not to be confused with pH, which is the acidity of the blood). If not treated in an expedient manner, this could be a very serious issue. So when Kate and I first heard this, the decision to move ahead with the trach was an easy one. One may ask why not just put Max back on the vent? The evidence would suggest that this will be a chronic issue for Max and likely require proper ventilation for many months/years to come to prevent issues down the road. That is what we want. We want whatever is best for Max. The reality of the trach just plain sucks, but it is time to do what Max needs and not what we want. I think the hardest thing for Kate and I is that we just want things to be "normal" for once. We just want the boys home. The trach will push back any sense of normalcy by about two years. This has been a long journey. The boys will be 5-months old this week. Our kids have lived in a concrete walled nursery for almost 150-days. They have never seen the sun, never been outside, never "seen" the dark, never "heard" quiet. On the other hand, we feel so incredibly blessed that we get to go see and hold and play with Max and Wes everyday. The thought of a trach just draws our minds to thinking about the future, and that is a very dangerous thing. We start thinking about the nurses who will be in our house 12-hours a day, having to buy a new vehicle, not being able to go anywhere and show the boys off for likely a year or more. We know this is all part of God's plan. The difficult thing is that Kate and I both felt that God has rewarded our faith in Him when we asked the doctors to wait on the trach surgery 6-weeks ago. He worked a miracle in Max's lungs, and now it seems like a loss. Had we done the trach then, Max could be home right now, his heart could be in better shape than it is and he could be more comfortable. God's plan has not always been evident through this journey, but it seems like His timing has been an easier thing to decipher. Until now. We prayed for a clear direction on the trach issue, and I guess we got one when Max's heart started showing signs of stress. It is just hard when God answered the very same prayer in a completely different way 6-weeks ago.

Max is also going to be having surgery to have a feeding tube permanently placed in his stomach. It is called a G-tube. G-tubes and trach almost always go hand in hand because a child with a trach does not need any risk of aspirating something from their stomach into their lungs. So the G-tube provides a port to feed Max safely. We will still try to teach him how to take a bottle, but the likelihood of him taking a 70ml bottle after a few months of his food bypassing his stomach altogether is not very good.

From what we have heard, Max will have his G-tube surgery on Tuesday and we don't know when the trach will happen, but it will be this week. We had heard it might be tomorrow, but the G-tube surgeon said he would rather not do the surgery right after a trach procedure. So who knows. We will keep everyone updated as soon as we hear anything, which will probably be about 5-minutes before they take Max to the operating room.