I'm Back

I had such a great time. It was so nice to catch up with my friend, it was like no time had passed at all. The weather was beautiful, got some serious shopping done and even saw a shark on the shore. Rick and I are hoping to make a trip out there before the basketball season.

The kids did great while mom was gone. I think this is a first that I am not in the hospital the day I get back from a vacation. Although I probably shouldn't have said that b/c as I type Mr. Avery is on oxygen. He has been struggling since last night to keep up his sats (never a good thing) but he seems fine during the day. Who knows???

Janessa started a swim team a my gym today. She did great in keeping up with the kids but was NOT thrilled at all about doing it b/c it was alot of work. Poor kid did laps and lunges the whole hr. But I think this will be a good thing for her and she really has no choice. A little hard work never hurt anyone. Plus it makes me continue working out 2 days a week. We will see how it goes.

So all it good right now. I will post pictures this wk. of my trip. I am not a huge picture taker but do have some.

I'm Off

The boys decided that they would behave so mommy could go on a much needed trip. What good kids I have!!!!! Although Janessa was not in agreement because she has a pretty big stye in her eye. I think daddy should be able to handle that one though. Isaiah came out of his long horrible cycle yesterday and Avery seems to be better in the respiratory department. His infusion went very well on Tues. so hopefully he will be good for a bit or at least until I get back.

I am looking forward to not being mommy, secretary, nurse, nurse case manager and Audiologist for a few days. Instead, just be me and meeting up with an old friend and hanging out at the beach and out at night.

Also I wanted to wish my cutie pie neice Demi a HAPPY FIRST BIRTHDAY tomorrow!!!!!!!!! Where does the time go, it just as if I just posted she was born. Hope you have a great day sweetie.

Busy, Busy

Avery continues to struggle a bit respiratory wise. This concerns me a bit because I plan on leaving town on thurs. and he is ending his oral antibiotics by sat. Cutting it close for sure. I have alot of nursing coverage but nobody does it like momma of course :)

Isaiah has been in a horrible migrane cycle over the past couple of days. I am just beyond frustrated for him. His cycles are getting more intense it is really horrible to see him like this. Just not fair. We are really running out of options which is so sad. I'm hoping he will be back to himself by tomorrow fingers crossed.

So with all the madnes in my life, I have decided to cut work down to three days. This means tightening our belts but it is really all too much. I literally don't have any days off b/c I am scheduled to work 4 days but the boys always have a drs. appt. on my one day off or Avery being in the hospital really makes it difficult. However, I am sooo very lucky to have such a great understanding job. They want me to do whatever works best for me and my schedule. I just think it is best for everyone if I am scheduled for only three days and if I need to work more than I can but am not obligated too. Especially with the up & coming flu season, sounds like I'm gonna need it.

Avery has an IVIG infusion in the early am. I'm hoping all goes smoothly but then I have to drop him off and go to work. Ugh. We could use some positive thoughts that all stays quiet around here for a bit. I REALLY could use a break away. This is a friend that I was very close in high school with and have not seen her in over 19 yrs. I am excited to catch up with her and her family.

Will keep you all posted.

We are not starting off the fall as well as I expected. Avery doesn't sound much better than he did while he was in the hospital at the tail end. He continues to be very junky and needing frequent suctioning as well as O2/bipap at night. They had switched him to oral antibiotics to go home and he just does not seem to be kicking the pseudomonas. I will be calling the pulm. dr. on Monday to see what we can do about it. Of course I am nervous about things turning the other way and having to head back to the hospital.......

Momma is going to Florida on thurs. to see a friend I have not seen in over 19yrs. I am pretty excited and really do need a getaway. Of course I got the insurance for the flight b/c ya never know what will happen with Avery. Although he usually waits until the day I get back into town to get real sick. He is quite considerate like that, LOL.

We will see what the weekend brings.....................

Is this Any Indication of How Happy He is To Be HOME

We came home yesterday, I was pleasantly surprised. Avery had an uneventful night so we were free and clear to go home. YAY!!!!!!!

Although I do have to say how nervous I am for the up & coming season. Very scary this whole swine thing. I truely believe it is not a scare. I know the hospital is worried about kids comprised like Avery that they and the nursing staff will get it and there will be a shortage of beds, staff, ventilators. Just craziness. Considering Avery got so sick this time with psedomonas, I cannot even imagine how sick he will be with any flu. He already got his flu vaccine and we all will most certainly get the swine one and I will do what I can to keep our family healthy. Buuuttt..... I will continue to enjoy being home when I can as always.

Thanks all for praying for us. Keep healthy all.

I really have to learn to stop planning my discharge day ahead of time. We were so going home today, got paperwork done, scripts done, gj tube changed early this morning and even a flu shot...........When Mr. Avery decided he'd stay a little longer (probably b/c he has his very own tv and can watch it when he wants). Around 12pm his heartrate started to creeop up and has still not gone done. It is usually high for a few reasons (dehydration, pending fever, pain). He is smiling so i am sure it is not pain and he has no reason to be dry. He has not spiked a fever yet but it takes him awhile too and I suspect he will tonight. He has all the signs of a fever (warm, breathing fast and high heartrate) so they decided to run bloodcultures on his central line. God this brings back baaaad memories when his line was infected with yeast b/c he presented the same way. I think I am always thinking he has a line infection b/c I'm so scared after the last experience. So god willing it is nothing.

I unfortunately cannot stay tonight b/c I have to relieve the nurse b/c Rick has a work thing. I also HAVE to work tomorrow. I feel very confident with the crew here as they all know Avery well and I know they will call me if anything goes down. I honestly stopped feeling guilty a long time ago b/c we are here 95% of the time with him but we also have so many other obligations and "ya gotta do what ya gotta do". So hopefully Mr. Avery has a peaceful uneventful night and day tomorrow and he we can try the whole discharge thing at some point :)

Slow and Steady Wins The Race

Avery has recovered nicely. He is still slowly being weaned off the Bipap machine but his breathing is so much better. At the beginning of the week he was on high setting of the bipap and could not even tolerate O2 at its max. If he was off for a few minutes he would desat and his face would turn dusky and blueish. I am always amazed how this kid goes from being really ill to back to baseline within 3-4 days. That's my boy :)

So the plan it to go home on Monday pending he doesn't decide to act up. Somehow I think he won't b/c he is not a fan of being there. Although he is with the best crew there and is a lucky boy he has nursing fighting over him. He does have his favorites though :)

On friday I decided instead of sitting by his bedside watching him on bipap, that I would go donate some blood. I'm a bit embarrassed to say I have never done it before. I was pretty excited about doing it too. I went down and did the paperwork and all but I did not pass the physical to qualify to give blood. WHAT??? So my blood pressure needed to be above 100 and after eating salty foods and drinking plenty of water it was still the same
:( So I was not able to donate. I certainly to plan to though, I may have to try in the afternoon or something. So I was definetly dissapointed as Avery has had his fair share of transfusion and so many kids need it.

The plan is to be home for as long as we can during the up & coming season but I am guessing it is going to be hard since Avery was already so sick early so early in the season. But, ya never know. I think I did a little too much celebrating over the summer. I might have jinxed myself. I will continue to be grateful for the time we ARE home and get to go home from the hospital. Oh, and everyone couldn't believe how big and chubba Avery got, he is so growing up.