More of the same

Wow, I cannot believe it has been a week since the last post. It has been a pretty quiet week for the most part. We found out that Wes is going to be having the Nissin G-tube surgery on Tuesday, but we won't know what time until Monday. In the meantime, Wes has been hanging out at the hospital waiting. He has had a good week. Kate was at the hospital from last week Sunday until Friday night when I kicked her out and told her she had to go home for the night. Even then, she didn't sleep well because she is so accustomed to waking up and dealing with Wes at all hours of the morning. At any rate, that is just WAY too long to be in a hospital if you are not a patient. Wes is certainly back to himself. He has quickly learned that if he so much as whimpers, Mom will pick him up and rock him and bounce him and pat him, etc. He has learned even more quickly that Dad will hold him when he is calm and can behave like a big boy. And watch football. Just kidding, that was my lame attempt to act like a "tough love" kind of dad. Wes was having a nice quiet weekend until last night when his feeding tube clogged. This tube goes up his nose, down his throat and through his stomach into his intestines. The tube goes into his intestines to prevent reflux. After trying every trick in the book to unblock the tube (these tricks include using Coke and meat tenderizer to try and break down any protein deposits that may have built up), the decision was made at about 1:30 this morning to give him an IV and give him some sugar water to keep him hydrated until surgery on Tuesday. After giving it some thought, I mentioned to the doctor that I would rather not forgo 48+ hours of good nutrition and said that Wes has been through so much that a little tube up his nose wouldn't bother him in the least. That would be fine down in the NICU, but in Pediatrics, they do things differently. If Wes was in the NICU and his feeding tube clogged, they would have pulled it out and put in a new one...call it 5-10 minutes worth of work. That is not how it works in Peds. After about 12-hours worth of effort trying to unclog Wes' feeding tube, they called down to radiology to see if there were any openings for Wes to be transported down there and put under the fluoroscopy machine (a real-time x-ray used to see where the feeding tube is going and to ensure that it is positioned correctly). Of course there wasn't...it is the weekend. So, right now, Wes has a feeding tube in his stomach again, not his intestines. This is somewhat risky. We don't know if he will begin to reflux and aspirate into his lungs or not. He is on a drip feeding compared to a gravity feed, so we hope that he won't have a lot of volume in his stomach at any given time. I have noticed already that he is coughing more, so I am really hoping that this is a coincidence and not him refluxing already. Tuesday cannot come quick enough. From what Kate and I have gathered from various nurses, if the surgery and recovery go well, Wes may be able to come home sometime next weekend.

Here is Wild Wild Wes enjoying a tubby. It takes about 10 minutes, but then he enjoys it. Kind of:

Max has had a fairly busy week. For those of you keeping track at home, Max's vent pressures are currently 26 over 11 versus 30 over 10. So up on the bottom pressure (PEEP), down on the top (PIP). His oxygen needs have stabilized a bit in the 40% range, mostly due to the vent change. Max did have a follow up heart echo on Friday too. That report showed essentially no change, which, if I was a "half-full" kind of guy, would see that as not getting any worse. The crappy part is that the cardiologist that read the echo said that he feels the pulmonary pressure is more like 66% of systemic, not 50% (refer to the last post for a description of the heart's pressures). This would indicate that Max's pulmonary hypertension is more severe than we thought. And there is nothing we can do about it. He is on the maximum dose of nitric oxide and the maximum dose of Viagra. Both of these drugs are designed to reduce the blood pressure in the lungs. So we wait. I do not know a lot about "severe" pulmonary hypertension, but I do know that phrases like "poor quality of life" and "shorter life expectancy" start popping up. The best thing for Max right now is to grow, and he has been doing that pretty well. He tipped the scales at 12 lbs 9 ounces last night. The down side is that his growth all seems to be happening in his cheeks and not his lungs. I was asking him earlier today if he thought the Broncos could beat the Browns this afternoon...he gave me an open mouth grin and they won 27-6. Coincidence? I will let you decide. I should add that it takes a tremendous amount of energy for him to smile, his cheeks are that big.

A happy camper:

Cuddling with Mom: