Things are Gonna get Crazy

Workwise. Currently I practice audiology in nursing homes which is great for my lifestyle, basically the only job I could have with sick kids. It is great money to boot. Problem is, we are short staffed and have been for over a year now. Now I cover the Northeast Mass, Central mass and the north shore and some of the south shore. Sounds more like the whole state rather than teritory huh, Crazy. Well, they asked me to take on NH as it is only over the border for me. Potential to make good money is there but is adds so much more work. I get calls and emails almost daily requesting me to go to some home for a hearing aid eval. or problem but it could be in gloucester while I am in lowell that day. Everything is always immediate which is crazy with hearing aids. So I am already spread so thin and am now taking on more. I think I am surely going to regret this one. But maybe I like "crazy", ya think.

Avery is still pretty much the same, struggling respiratory wise and anxious and everything else in between. He is just a trainwreck, poor kid. Just praying for strength and his healing at this point, nothing else you can do.

So mad that our pool did not get open yesterday. The totally no showed. It is so hard to get an appt. at this point in the season. Looks like Rick may be trying to figure it out for himself.

Pray that little man has a better weekend b/c at this rate looks like he maybe back in the hospital this month (June) you know my goal is to stay home the ENTIRE month. Lots going on and no time to just sit in the hospital.

Glad you all seem to be liking the new layout. Avery just had a HORRIBLE day today. He is just so incredibly junky, cranky, and uncomfortable. I am just telling you, it is terrible watching your baby struggle on a daily basis. I swear that is as bad as life get. He has just changed me in so many ways. I just don't stress about things anymore and am such a homebody now. Avery truely settled me. Looking back now, I was a crazy, wild girl that was always here and there and driving to everyone's house b/c I could not sit still. Now, I hate committing to anything. I just enjoy hanging out a home with a good book, a glass of wine and my family. This is all good. But I really wish my little guy did not have to suffer. And that is what he is truely doing. It is gruesome to watch. Please pray for my little guy to feel good and happy like a baby should feel. Here is my little guy when he is happy, although this is not anything recent. Sorry but it is really hard to get anything recent of him being happy.

Let's see how you all like this layout. It is alot of work to keep this blog looking good. Especially since I have such little time. But I will keep working at it.

Avery is still struggling respiratory wise, I supposed it will take some time for the swelling to go down. He is so much more junky and seems more anxious about it. My nurse was sure he would have been back in the hospital the other day b/c he was doing so poorly. I swear this boy is always 2 steps away from the hospital. We are all doing the best we can to keep him home and comfortable. Sure is hard work though.

Our pool is being opened today. Wondering how the boys will do this season in it. Isaiah hates to be cold after he gets out. Avery loved it last year so we will see if he likes it this yr. Janessa of course is a fish and will surely live in it.

Isaiah has field day at school today, I gave his nurse the camera to snap some shots of my handsome guy enjoying school. I am getting pretty sentimental about him turning 6 next week. I cannot believe how fast time flies by and all that he has been through and how well he is doing.

Perhaps he came home too early. Avery did not have a great night or a good day today at all. My nurse was very unsettled with him today. She normally does not feel like that and it gets me worried whenever they feel like that. He was just posturing like crazy, even to the point of curling his toes. He wasn't crying all day but just making alot of bizarre movements and was breathing really fast and retracting his stomach. He was keeping up his sats. so he could not get O2 or anything. She was worried he would tire out from all the rapid breathing. Just was describing it as he was having anxiety attacks. My poor poor little guy. Just breaks my heart. We are trying to keep him sort of sedated to relax him and it seems to be working so far. I just really hope it passes soon for him. This baby just NEVER feels good. I really think he only knows pain. It is just not fair for a baby to go through all of this.

BTW, the concrete was layed for the Lift for the boys. The lift should be put in in 2 weeks. Can't wait to show you all some pictures. Rick wrote the kids names in cement. To cute. Sure hope we stay in the house forever, LOL.

I'm Back

I have to say that Rick has done a pretty good job of updating when I can't and brownie points are always a good thing. LOL.

So as he was saying, Avery did very well with the surgery and recovery. He would have actually went home on Sat. but the craziness started with his heartrate and the waveforms. They did an EKG and it was abnormal so they were getting really concerned and ordered an ECHO of the heart. Luckily that turned out okay but they noted how deep the port was in the atrium of the heart. So there was literally of 24 hr. debate between surgery, anesthesia, cardiology and the ICP drs. as to whether the port was to close to his heart and causing cardiac arhythmia's or not. So the did bloodwork and all was good. They even gave the kid phentanoyl to knock him out which did absolutely nothing to him to see if his heart would slow down. That did not work. He had a good night but by the morning they decided to take him to the OR without informing me. Then when I asked them about it, the surgeon's had changed their minds and decided to port was fine where it was. Then they were sending us home. Just madness. They explained away that all of his symptoms were nothing and that I could go home but needed to follow up with surgery this week. FOR WHAT I asked!!!!

If they are comfortable with where his port is then why do I need to follow up ASAP. KWIM?? Doesn't make any sense. So I asked them, would I see any signs at home of the port moving or causing any issues like a heart attack or anything and they said no. Boy, I sure hope not.

Other than that little snag, my little guy did really well. My goal was to be home by Sunday and we met that. The power of positive thinking and prayer.

Hopefull we can meet our goal this time of getting beyond 4 weeks hospital free. I will keep positive and vision it. June will be the month that we are not in the hospital. What do you think? Think I will make it this time!!!

So I also see that many of you like my blog layout BUT...... So I don't love it either. Is it the color? Theme? or do you miss seeing our wonderful family photo LOL. I have some work to do this week with changing it. I will have a new poll with it. So please keep voting and giving your input. I want to make it where it is easy to read and appealing to keep you guys viewing our crazy life.

The latest on the little guy

The doctors are now convinced that the increased heart rate has nothing to do with his port. Avery has done well the last 24 hours and will be coming home later today. I know that this is a very different story then I posted yesterday but that's how Avery is. He can go down hill or respond very well within minutes. Nicky will post later with more details.

Avery Update

Sorry for not posting sooner but things have crazy on our end. Avery did fairly well with his surgeries on Thursday. He looked good coming out and seemed pain free for the most part. So Thursday and Friday went without iny issues. Of course this morning Avery wakes up and seems to have an increased heart rate, After consultation with a few doctors it is determined that there is an issue with the port and it may have to be removed. So as of this moment the doctors are tryig different meds in hopes of reducing his heart rate and keeping his port. As always things are never simple in the Nault household. Nicky is still with Avery and you know her she will get to the bottom of this one way or another. I am blessed to have her as my wife and as the mother of my children. Yes, it doesn't hurt to score some brownie points with a comment like that but in this case it is more the appropriate.

I will update more info as I get it.

Rick