On the Up Side of Things

Okay, now that I have scared everyone I have some things to report that are more on the up side of things. We are still not out of the woods as far as doing the transplant now, but I will explain everything in detail. I have to start with some very good news first though. Max had his scheduled hemo dialysis this afternoon. While we were there he fell into a deep sleep and didn't desat!!! He stayed in the mid 90s the whole time!!! Anyway, here we go...

After a lot of discussion between the doctors and then the doctors and I, I think we have a plan. They are going to check a blood gas now to see if Max is able to rid of the CO2 in his blood. This is basically to get a baseline for where he stands when he has a good oxygen saturation. They are then going to restart his PD at 6:00pm with a fill volume of 100ml (down from 180mL last night). If he desats with this volume they are going to give him the blow by and let him continue. They did a chest xray last night and that ruled out pneumonia, leaks and hernias. So they are comfortable letting him go with the oxygen. They are then going to do another blood gas at midnight. If this comes back good they are going to let him continue his treatment with the little bit of oxygen that he needs. They will then send him home with the low fill PD, oxygen and monitor. If the gas is bad they will stop the treatment and reassess our options if we have any left. If he doesn't desat at all, the will send us home on the low fill PD and a monitor so that we can keep an eye on him. The original plan was to discharge tomorrow after hemo, but they are going to keep us here until Sunday morning for an extra night of monitoring. Depending on how tonight goes will determine if they do the PD tomorrow night as well.

The bottom line is that the extra pressure in his abdomen is putting pressure on his diaphragm which we believe is partially collapsing his lungs, which in turn is causing him to desat. The reason we feel that Max couldn't keep his sats up after he came off of the PD is because it took his lungs awhile to expand. Max looks very comfortable and does not retract while this is happening. With that said, Dr. Dixon doesn't feel that Max's lungs are too small to support him alone, but when you add the pressure of a kidney or fluid they are too small. If we have to go into the transplant, Max will most likely be on the ventilator and then the nasal cannula for awhile.

Okay, so as I was writing this, pulmonology came in to see Max. Considering they have never seen him before and they just got his charts this afternoon, they feel that Max is not out growing his lungs. It's hard to say what the future brings, but they said they don't see a reason why he would. His lungs should grow with him and continue to produce air sacs as they should. He shouldn't be at an increased risk for asthma or allergies. So, basically he can live a totally normal (however you want to define normal) life with his lung volume. They are going to do a sleep study tonight to see how everything is working while he is asleep. They said that this will give them a lot of information to determine the future. They want to do it while he is on the PD since that is when he is having trouble. Dr. Ben just came in and said they are going to push him hard with the PD since he will be on all of the monitors (picture EKG times 10). They are going to do a fill volume of 200mL tonight so that they can get the best results from the study, so ignore the 100mL fill that I said before.

So to recap all of the mayhem from above:

PD tonight with a fill volume of 200mL (up from 180mL last night)
Sleep Study tonight while he is on the PD
Repeat gas if he needs it (the study will monitor this without the needle stick)
Oxygen will be given as needed (He will come home on it for when he is on the PD)
Hemo dialysis tomorrow morning

Overall a much better evening than morning. Everyone seems to be happier now that we have the lung experts involved. It seems that we have a plan in place, now we just have to hope and pray that it works in the way that we want it to.

I am personally feeling a lot better now that the experts told me that Max is not outgrowing his lungs, at least at this point. I will push that fear out my mind until I have to worry about (IF I ever have to worry about it). They did tell us that Max will never be a sports star (oh shucks) and that he will have to have a desk job (or be a doctor). We can live with that. I personally was going to make him live his life wrapped in bubble wrap and it would be hard to play baseball like that anyway. I would assume that golf would be okay. So, Dr. Ben may have a golfing buddy in a few years.

Anyway, I am absolutely exhausted from the last 24 hours, so I am going to go put my pj's on, grab me a bowl of ice cream and plant my butt on the couch and watch me a movie (if I make it through one).

We hope you all have a great weekend and I will let you know how the sleep study goes tomorrow.