What a difference

Wow. What a difference a week can make. I will start with Wesley tonight. On Friday morning, the docs decided to take Wes off CPAP...and boy was he happy!! He is back on nasal cannula and really enjoying sleeping without a full SCUBA apparatus on. He has improved a LOT on his oxygen needs as well. On the nasal cannula setup, they measure the amount of oxygen given in "liters of flow" versus a percentage. When they first moved Wes to cannula, he was at 5 liters of flow, and as of this morning, he was down to 0.10 liters of flow. He is like a whole new kid. Kate and I were just talking this morning about how we both think Wes feels better now than he ever has. He is not being too fussy, he can entertain himself in his crib, he is starting to smile a lot more, and really enjoys watching football with his Dad. They moved us out of the PICU on Saturday evening because Wes was doing so well and they were filling up pretty fast up there. So we were moved to a "regular" pediatrics room. This was fine by us because it means that we get a private bathroom with a shower!! As fun as it was to wear Aqua Socks while showering in the 3x5 foot community shower shared with about 75 other families in the PICU, it is an adjustment we are willing to make. Wes and I had a slumber party last night in our new room, and he slept like a champ. Granted, all the running around the hospital room during the Michigan football game likely tired him out. We are not sure what the plan for Wes is right now. The decision has been made to go ahead with the Nissin G-tube surgery (same permanent feeding tube surgery that Max had), but we do not have a clear message about when that might happen. One doc said that we should talk to the surgeons on Monday and get it scheduled, another indicated they may want to wait as many as 3-weeks to make sure he is fully recovered from the respiratory bug. So we have no idea if he will be discharged in the near future or stay a patient until after he has the surgery. Hopefully we will know more tomorrow.

Max had a good weekend as well. His oxygen needs continue to bounce all over the place for no apparent reason, however. He did stabilize in the high 40 to low 50% range for the better part of the weekend, but had another episode last night where the nurses had to bump him up to the 80% range. The really crazy part is that he slept through the whole episode. After a couple of hours, the nurses were able to wean him back down to 50% or so. The biggest fear for Max right now is pulmonary hypertension (PH). As we all know, the right side of the heart pumps blood to the lungs to handle the oxygenation of the blood stream while the left side of the heart pumps blood to the organs and extremities. A healthy heart has a pulmonary blood pressure that is about 5-10% of the body's systemic blood pressure (the BP reading we are all familiar with, ideally 120 over 80). Max had a heart echo on Friday (kind of a surprise to us) and the cardiologist that read the echo guessed that Max's pulmonary BP is about 50% of systemic, which would be considered a moderate case of PH. I spoke with Dr. Doctor at length last night about it, and he said that he had another cardiologist look at the echo and that doctor said that there was not a lot of evidence of PH. So we are in a bit of a holding pattern. The only real way to tell what Max's pulmonary BP is would be to put him through a procedure where they thread two wires from his groin all the way to the heart to measure the pressures. Dr. Doctor said that he would rather not put Max through that because they would likely not change anything based on the findings. Max's gases continue to be nothing short of phenomenal, but the docs have been hesitant to adjust his vent settings because of the volatility of his oxygen needs. Please pray with us that God will continue to touch Max's lungs and provide healing. He has performed miracles in Max's lungs before, and we want to ask for another.

Not only did the boys both have good, stable weekends...but football is finally here!! Not only did MSU lose, U of M came out on top of easily one of the best football games I have ever seen (and I got to watch it with Wes...who REALLY likes the TV), but I also got to go watch the Denver Broncos game, and they came out on top on a last second fluke play. On top of all of that, the Quest for the Cure race was this weekend, and we had an absolute blast. A huge thank-you to everyone who came out and participated, and to Rob and Tiece and Jason for giving of your time to put everything together. Kate and I look forward to showing Max and Wes pictures of the event and hopefully participating on the other side of the race next year. Gratitude is a hard thing to convey in words, and it has become increasingly difficult as God has continued to bless our family through so many of you. To say "thank-you" seems so meaningless. The reality is that your faithful prayers have been the difference. You have stormed the gates of Heaven on my sons' behalf and your prayers have been answered on so many occasions. The more tangible gifts, ranging from meals and lawn mowings to monetary gifts and gas cards, have alleviated an enormous source of stress in our lives right now, and allowed us to focus on being the best parents we can be to our boys. Thank-you is just not enough.