Piper has been doing better and better. Today, her oxygen came down to 35%. She has been getting full feeds and has been super playful. In addition to visibly feeling better, Piper will have one of her favorite nurses for the next couple of days. If she continues at the current pace, it is likely that she will be discharged early next week. Where to, becomes the next issue. Reagan spoke to Piper’s Dr. at Blythedale, this week. She said that they may be willing to take her back there for a bit, to get her dialed back in on stable vent settings, and comfortable on trache collar again, etc. As always, the largest factor will most likely administrative logistics (funding). Thanks again for all of those who have kept Piper in their thoughts and prayers over the past week.

Update: I just got a call from the social worker at Columbia. Piper is scheduled to head back to Blythedale tomorrow morning at 10 A.M. Whoopee! Hopefully she will be there long enought to get feeling 100% before going back to Wanaque. Dude, what a crazy week.

A bit late this week, I know. But I was a little bit preoccupied on Monday, with some more pressing issues. Thursday afternoon is better than never, though. Right? One of the cool things about having a significant other, is being exposed to music, movies and other cultural items that you may have never known about otherwise. When I first started dating Reagan, I was exposed to a lot of music that I probably never would have been interested in, had I not met her.  That goes for most of the bubble gummy type of stuff that I listen to. I always had kind of an aversion to it, probably because I thought like it didn’t fit in with my image, or something. Whatever all of that means. Anyway, I met Reagan. She listened to Destiny’s Child, had a girl crush on Beyonce, etc.. I thought “Hey, I totally dig Reagan, who is totally amazing. Maybe this music that she likes so much, isn’t as lame as I have convinced myself that it is.” That’s not to say that Reagan’s musical taste is limited to bouncy pop music. There is actually quite a significant overlap in our itunes libraries. But Destiny’s Child is definitely one artist that was not in mine, until I met Reagan. It didn’t take me long to figure out why Jay-Z and Reagan love Beyonce so much. The song that I’m sharing today is “so good” from “Writing’s on the wall.” Give it a listen.

Even though this shot of Reagan is small, look how cool it is that both of her feet are off of the ground. She is flying.

Piper, although clearly still in need of lots of rest and recovery, was acting a lot more like her usual self, yesterday. I took the day off, and Reagan didn’t go into work until 1. So, we were both able to spend a lot of time hanging out with her.

It was so fun to see what goes on in a day of the life of Piper.  In the photo above, she is getting an Echo cardiogram (not sure if I’m spelling that right). She handled it like a champ. She hardly wiggled at all. At one point she was poking the tech’s hand and being playful with him.

Luckily, we have some toys and clothes at home, that we could bring her, since they didn’t send any with her. Even though she was pretty content on Monday night just playing with Reagan’s chapstick, I’m sure that she was glad to have some proper toys again.

Thanks to all of Piper’s friends, who came to visit her last night. She loves the attention. It is really great to feel so much support.

I have come down with a pretty bad head cold, today, so I can’t visit her. But I have been calling to check on her. Her nurse said that her x-ray is looking a lot better. She also said that Piper slept in until about 10, then has been playing and being cute, since then. Her vent settings have also come down a bit. He rate has been lowered to 20 (from 28, I think) and her Oxygen lowered to 50% from 60%.

Dear Jake,

What is the longest word in the english language?….And how are the human circulatory system and lymphatic system alike? How are they different?

Name: Help Me I Pooped In My Pants!!!!

Answer–

Well, I hope for your sake that “Help Me I Pooped In My Pants!!!” is some sort of pseudonym. For convenience sake, I’m just going to call you Defecator. Look Defecator, don’t think that I can’t see what is going on here. You are doing your homework and instead of learning this crap by reading your text book about English Anatomy, you are asking me. Yeah, that’s right, I saw right through you. Normally, I wouldn’t help someone cheat on their homework, but I’m going to make an exception this once. First of all Defecator, make sure that you capitalize the “E” in English when you are writing your homework assignment, teachers are anal about this kind of stuff. I knew what you meant in your question when you said “english” with a small “e” but your teacher is going to pretend like he\she doesn’t. Ok, so the longest word in the English Language is Pneumonoultramicroscopicsilicovocanoconosis. It is 45 letters long and it refers to a lung disease caused by airborne particles. I’m going to make a diagram to illustrate the answer to your second homework question. Click here. Really, Defecator, it is a shame that I had to point the answer to that one out, I’m sure that your teacher was giving you that one as a freebie. It makes me wonder what the school system is coming to these days. But look Defecator, if you want to get some extra credit, you should make an argument that the answer to the question is moot because robot bodies are superior to human bodies anyway, then refer to this diagram to illustrate your point.

Take it easy, Jake T.

No sooner, had I published the early post about Piper, than I received a call from the nurse practitioner on duty at Wanaque, saying that Piper’s condition had worsened and that they were going to send her to the ER at St. Joe’s in Parsippany NJ. I begged her to do everything that she could to get Piper back to Columbia, instead of some strange ER that Piper has never been to. She told me that sometimes Columbia takes too long with the transport, but that she would see what she could do and call me back. Even though I was calm on the phone, inside I was flipping out. I truly believe that a lot of prayers were answered today. After informing my family of the situation, I was able to contain my anxiety, for the most part and finish up some critical items at work before receiving a phone call that Piper would be coming back to Columbia. This alone was a not-so-small miracle for us. I was able to meet Piper as she arrived. They had to admit her through the ER, since she hadn’t been there in so long. She was as awake and active as I have seen her since she left Blythedale. For a minute, I thought that she may have just been faking sick, so that she could come back and say hi to all of her friends at Columbia. The nurse who was on, during her admission, remembered Piper from one of her prior visits, and allowed us to be very involved with her care, all the way up through IV’s and everything. It all went extremely smooth. Even though she was being totally squirmy, I was able to get her to hold still enough for a good chest x-ray. Some of our friends from church were kind enough to come straight from work, and even pick up some oil on the way, so that she could be blessed with health.

Since the PICU was over capacity (as usual) we weren’t able to get up there until about 11:30, or so. But when we finally did, Piper got a great room in the Central section, which is all brand new. The photo above is of Piper being transferred from the ER to the PICU. She was getting really friendly with the doctor, using the doctor’s arm as a leg rest. Piper’s chest x-ray revealed that she is suffering from a nasty case of pneumonia. They are giving her a full spread of antibiotics for the next couple of days, to try to help her clear it up. We are so grateful to everyone who had Piper in their thoughts and prayers today. I was there to witness  that they were being heard. It also overwhelming, the support that Reagan and I have felt on such a tough day, especially when we don’t have any family that is close. After seing Piper yesterday, I will admit that I was expecting the worst. I thought that most likely she would have to be resuscitated after the transport. I can’t even articulate how comforted I am to see her doing as well as she is. When I left tonight, Piper had finally started to tucker out after being so active and playful this afternoon. Even though the circumstances weren’t optimal, it was so great to be able to spend 9 hours straight, with Piper today and not have to worry about parking or anything when I was ready to leave. I know that this post was kind of all over the place. I apologize for that. I guess that I had a lot to say, and am not particularly organized at the moment. I plan on hanging out with Piper all day tomorrow, if anyone feels like coming by to visit the little squirt.

Warning: this post contains some negativity.

Reagan and I have been trying to maintain a positive outlook regarding Piper’s new home. Of course it is always going to be an adjustment, going to a new place. There is new staff to meet, new procedure, idiosyncrasies etc.. It has been about a month now, and Piper has not made any progress. In fact, she is honestly not doing so hot. She has still not been able to overcome whatever it is that caused her to have a fever and coughing. In fact, by my observations yesterday, she is much worse. I’m going to give the benefit of the doubt and assume that this is the reason that her vent settings have not changed at all (still much higher than when she left Blythedale) since she has arrived, and the reason that we have still heard no mention of a trache collar schedule. I won’t go into detail with the other disheartening details that I observed, but I will say that I get a general sense of neglect when attempting to assess Piper’s situation.

Piper is not her normal self at all. She barely wakes up, at all when we are there. When she is awake, she is not interested playing, sitting up or standing. Reagan and I both had extended conversations with Piper’s social worker and nurse practitioner, today. They were good at listening, but we didn’t really feel satisfied with the explanations that they were giving for Piper’s dramatic shift in constitution. Reagan and I will be meeting with Piper’s doctor on Thursday, hopefully we will come away from that meeting hopeful.

The only thing worse than witnessing all of this, is the general feeling of helplessness to do anything about it. The situation is deeply troubling for me, but feel like it is even more so for Reagan. She has a tough time thinking about anything else. I have put off posting about Piper for a bit, hoping that I would have some good news to include. Unfortunately, things aren’t going so hot right now. So I guess I’m are hoping that those who share our joy in watching her grow and progress, might also find it appropriate to join with us in throwing up an extra prayer or two, this week, in Piper’s behalf.

We had a pretty good weekend, considering that it was supposed to continue to rain all day Saturday. Apparently, mother nature was able to get it all out of her system early that day, because it actually shaped up to be a pretty nice little weekend, weather-wise after Saturday morning. Reagan cut hair in the morning, then palled around with her girlfriends for most of the day. But we were able to go out for a stroll/skate in the evening. It was very pleasant. Reagan loaded up on bubble gum on her last trip to target. So she spent pretty much the entire outing, trying to impress me with her bubble blowing skills.

Sunday morning we got up nice and early, so that we could make it to Central Park in time for a Mother’s day race. We had a really good time. Reagan and I ran most of the race together. We finished in time to make it back for church. This was a bonus, given that one of our friends who is moving away, was giving an address yesterday.

We spent the entire afternoon visiting Piper (which I will address later), then had a barbecue with some of our friends in the evening. The chicken that we had taken out to thaw, was no where near ready, by the time we were going to the bbq, so I was just going to make a sandwich. But Carl bailed me out at the last minute with some cheese filled brats. So meaty. Thanks again, man.

Today is absolutely beautiful outside. I took a little stroll this afternoon, down to the BPC promenade, and shot a couple of pics along the way. This one is my favorite. Fixie, green Yankees jerz, fully tatted, looking right at me.

Let’s hope that this nice weather continutes all weekend. Reagan and I are running a 4 mi. race early in the morning on Mother’s day. Other than that, we have pretty much all weekend to just relax and hang out with Piper. I can’t wait.

These ones of Regan came out awesome.

Mine, not so much. Mostly because I wasn’t doing so hot.

Here we both are finishing