Simple Gifts

Finally...some good news!! Nick was able to get his breathing tube out today. He is back on his oxygen by high flow face mask @ 50% and I am cautiously optimistic that he will stay off the tube. Nick is awake and alert, but, he is a little bit sleepy this afternoon. After all that has happened to him in the past two weeks, I am amazed at his ability to bounce back seemingly unscathed. Nick's main goal right now is to eat! Alas, they won't let him have anything other than ice chips for the next 24 hours. Then tomorrow he must have a swallow study to make sure he is able to swallow properly. It would be very bad for Nick to choke on any food or liquids right now. If he were to "aspirate" anything into his lungs that could be a huge setback for Nick. So while he is none too happy about this "rule" it is safer for him to wait.

I am enjoying the hell out of this day and I am so happy that Nick has been able to summit this latest mountain! There is much work ahead, but, I know he will be up for the next peak once he regains some strength. My biggest worry is how his lungs will tolerate activity. Nick is very weak and his muscles have wasted away even more, if that is possible. The doctors have begun to taper his steroid dose, but, this will take quite a while as he has been on the steroids for many months. Unfortunately, the steroids contribute to the muscle wasting. I am very concerned about the level of weakness that Nick has right now, especially in his legs. I am not convinced that this is all related to recent events. I am withholding judgement for now, but, I just have a feeling about this.

The "new" set of doctors have been conspicuously absent. On July 1st, all of the interns and residents, and fellows start new! In addition, a new attending started as well. So basically there is not a single doctor here who knows Nick at all! Talk about frustration! And they don't really come in and get much information from us...I mean, really, what would we know? So I have been on guard duty at the door. Usually I have to filter everything through the nurses who come in with the doctors crazy orders and then send them back out to discuss with the MD's who can't be bothered to come in and talk to Nick or me. For example, the attending Dr. Wow, came in to impress upon Nick the importance of getting up, getting out of bed and doing physical therapy. Now, Nick is fully aware of the importance of all these things. However, my question is, has everyone forgotten that Nick's lungs are still not fixed? And, no one knows what is the matter with his lungs? Dr. Wow told Nick that "they" were going to turn him into an ATHLETE!! I was like....really?? REALLY!!! Can't wait to see that, hey, I'm all for it. Good luck with that....last time I checked functioning lungs were a pretty basic requirement for athletes!

None of these doctors even has a clue of Nick's condition over the past six months and more importantly over the past few weeks....for example, starting with his admission on June 5th! Since being admitted on June 5th, up until Nick's lung biopsy on June 19th, Nick had only gotten out of bed three times! That's like one time/week. Now why do they think that is?? Not because Nick doesn't want to get out of bed! Breathing and oxygenation are things we take for granted every day. We don't think about it, it just happens. I noticed that when Nick was on the breathing machine (when he was awake), his breathing was so comfortable for him that he almost forgot he was on the vent. I think that is why his energy level was so much better and his appetite was back, because he wasn't constantly worried about how he was going to maintain his breathing and he did not have to fear having a "breathing fit." I am not sure what all this means right now...I am going to see how things go. I would like to think that Nick was all better, or somehow through all of this Nick's lungs were miraculously fixed, but, I know that this will most likely not be the case. To have these doctors come in and act like all Nick needs is a good rehab/workout program is just ludicrous. If that was all Nick needed to do there would be no doubt he would be kickin' some serious John's Hopkins butt right now. Please continue to keep Nick in your prayers. After all this, we still do not know what is wrong with his lungs. I can only pray that the more time passes, perhaps his lungs will wake up and start working right of their own accord. For now, I will take the blessings that have been given, more time with Nick!

I used this picture of Nick and Kate camping because it reminds me of happier times and the joy in simple things, like campfires, roasted marshmallows and sleeping under a starry night sky.