"GOD AWFUL LUNGS"

Yesterday the pulmonologist walks into Max's room, sits down and looks at me and says, "let me tell you Mom, Max has some god awful lungs...just god awful." Hmmm...that was about a slap in the face. Each doctor has such a different personality and this particular one is a bit blunt. While it is difficult to hear, I appreciate his directness. (He is extremely intelligent and respected throughout the nation for his expertise.) He had been reviewing all of the slides of Max's lungs since birth and was really disappointed in how bad they looked. He proceeded to tell me that we need to get him out of the hospital before RSV hits. He is very worried that getting sick would tip Max over.

So the good and the bad news is that they are considering sending Maxwell home IF he remains stable over the next few weeks. He must gain at least 20 grams a day. Unfortunately he lost over a pound (which is a lot for such a little guy!) in the last two weeks due to his surgery, recovery, etc. HOPEFULLY his new GTube will allow him to truly put some meat on his bones. As of tonight he gained two ounces (approx. 60 grams) which was really great considering he hadn't put anything on for days and days. Curious what his length will be (we measure on Sunday nights) because length is actually the most important because that means his lungs are growing too.

The good news of course is that it would be incredibly wonderful to have sweet Max finally at home. No more living at the hospital...wow, that would be great! It's been five months now (including bed rest).

The bad news is that he remains "medically fragile" and will require a lot of intense care. The docs are not sure how much nursing care we would have since he doesn't have any mechanical ventilation. I am really going to have to fight the insurance company to get some help. But for the most part, I would be Max's "nurse". The pulmonologist basically said very seriously..."are you truly willing to do this? Are you able to dedicate your time to Max's health, keep him isolated and healthy, growing and are you ready to handle an emergency...because there will be emergencies."

Quite scary but this is what needs to happen...and of course I will do whatever it takes to keep Max healthy. However, if he doesn't gain the weight, it will be a good indication that his "chronic respiratory failure" is worsening and then we will be looking at heart surgery in the next month or so. The pulmonologist said he wants to move the surgery up but knows he will have to battle it out with the cardiac team, who is wanting to delay for several months when Max is much bigger.

So next week I am meeting with the discharge nurse to at least get an understanding of what needs to happen for Max's departure. One of the most important issues is meeting with all of the local emergency personnel in Bellingham...the emergency room, the general hospital, the ambulance, etc. and "introduce" them to Max through his medical records, etc. That way when an emergency happens, they know all about him and his medical conditions and we don't have to waste any time.

I did this exercise the other day and it reminded me of how much Maxwell is working every day to breathe. Try to breathe about 80 breaths in just a minute...it will wear you out. Now think of Max doing that all day, every day. It just breaks my heart. He is spending all of his energy just to move air in and out of his body...something we take for granted.