Boy Am I glad I was not here yesterday

I think I would have lost it. Rick is so good because Avery sure was in rough shape. Sometimes I am so grateful for Rick being so laid back b/c it really helps balance things. I got in here today and Mr. Avery did not look so hot. Still working hard to breath and tired. But from what everyone is telling me, it is a whole lot better then yesterday. Geez, can't imagine what yesterday was like :(

I had Rick have a conversation with the Drs. about getting a cardiac consult today. They were a bit resistant at first until Rick listed all the reasons we needed one and they finally agreed. Think they are just still thinking it is a virus. Yeah, virus my a** You don't keep filling up with fluid in your lungs and needing lasix. Sorry but that is just not normal. I am really working that there is yeast hanging out in his chest wall causing him to fill up with fluid in his lungs. He almost sounds like he has congestive heart failure. I am just scared for him. We REALLY have to get to the bottom of things. He is still spiking fevers too. Today he is done with the antifungal IV which also makes me nervous. They did put him back on IV vanco and did another round of blood cultures. Just dunno anymore.

Please continue to keep us in your prayers we so appreciate them. Thanks for checking up on us.

Avery Update

Today was my day off as I had to go to work. Don't know how I managed to work 5 days this week but it had to be done. He had a good night last night but needed alot of suctioning. So far his cultures continue to come back negative for the yeast we were worried about. But his respiratory status has not been good. Rick took over this morning and reported that Av was working Really hard to breath pretty much all day. Now if you know Rick who is Mr. laid back then you know when he tells you that (things are NOT good)then you should be worried. The drs. did all the typical things that usually help when he is working to breath but it did not help.

Drs. decided to do another chest xray which showed his lungs were filled with fluid. This basically meant that he was in fluid overload. So either his body is not getting rid of fluid as fast as it needs or they gave him way too much. Thing is, they have NOT overloaded him as he has been on his regular TPN and he did get extra fluids on the first day we got there but his body should have absorbed it. So he was working so hard to breath b/c his lungs were so heavy. Poor kid. It was so hard not to be there but Rick and the nurse and drs asured me that things were being taken care of. Soo hard not to just get in the car in fly over but what to do with Ness and Zay.

So they decided to give him albium? which is a blood product to help take the fluid off the lungs. Thankfully he breathing really got alot better soon after starting the treatment. So he seems better. But....this still worries me as it seems like we keep heading into new territory. I can't help but think we are missing something big. It is a nagging feeling that I have to I hope doesn't bite me in the a** later. This poor kid has been through soo much lately, it just breaks my heart. I honestly have little energy for much but my family and work right now. It is so hard that Rick and I only talk on the phone b/c we can't be in the same place at the same time b/c someone always has to be with the other kids. Have I said how much this all sucks.

But it was great to spend some birthday time with Isaiah and Janessa today. Ness has another softball game tomorrow and I have to relieve Rick.

Thank you all for the encouraging words.

HAPPY 7TH BIRTHDAY ISAIAH

We Love You and promise to have a nice little celebration once your brother is home and better. Although he enjoyed his evening at the movies watching "UP".

As frustrated as I am to be here, I know this is where Avery needs to be right now. He is acting pretty sick especially with the high fevers which seem to take awhile to come down. He last spiked this morning 104 and was in major respiratory distress. I had to go to work so I was not here and his nurse was new to him but luckily the rest of the floor knows him and handled things. So by the time I got here at 1p he was sleeping restfully on bipap.

So far his blood cultures are negative, YAY. We are nervous that he may still have some yeast hiding in his kidneys b/c they are still enlarged from the last infection and yeast can hide well. They put him back on ambizone which is the strongest antifungal and IV vanco. to cover their basis until all the cultures are finalized.

In all honesty, the way he is acting it seems like he has the flu. He was negative for Flu A &B and the swine is still out. Highly doubt he has that as the kid has not gone anywhere. We have met with the pulmonary team and have come up with a plan to combat the pseudomonas pneumonias. This is just a really tough bug to get rid of. We are going to keep him on another 14 day IV med along with tobramycin nebulizers (another antibiotic) for one month on and one month off. I am just praying this works b/c we really need a break from the place.


As you can imagine this has been a tough go for me and the whole family lately. I am a pretty postive person but I am also so exhausted balancing a chronically hospitalized kid, Isaiah's care, Janessa a full time job and spending time with Rick (which can be hard when we are both switching shifts in the hospital). I'm sure my posts are very up and down but they truely reflect how I am feeling for that day. So for today I am okay. Just a little sad that we have to delay Isaiah's birthday b/c I feel like out of the three kids, he gets the least of my attention b/c he doesn't demand it. He is such an awesome kid.

What I also did not post was that a good friend of my invited me to a special needs softball game. I am so glad I went with Isaiah last sat. We both had the best time and it was nice to just hang out with him and all these great kids and families. Like my friend said "you can have the worst day and go there and it is completely turned around b/c of all the smiling and laughing you do" She is so right. I will post pictures of that day and of our new swingset thanks to the same friends (Thank you King family :)

Back in the Hospital

As you know Avery has been struggling respiratory wise since we got home. I was hoping he would turn a corner but he has been working hard to breath and developed a fever today.

I drove him in which is always a gamble especially if there is a Red Sox game. I felt he was stable enough to be driven in. On arrival he was really working hard to breath which landed us to the trauma room. This only good thing about this is everything moves fast and he gets all the care he needs quickly. He is stable now so we are waiting on a room.

I JUST KNEW HE WOULD BE BACK :(


Poor Isaiah is going to be 7 on friday so no celebration this weekend.

Back in the Hospital

As you know Avery has been struggling respiratory wise since we got home. I was hoping he would turn a corner but he has been working hard to breath and developed a fever today.

I drove him in which is always a gamble especially if there is a Red Sox game. I felt he was stable enough to be driven in. On arrival he was really working hard to breath which landed us to the trauma room. This only good thing about this is everything moves fast and he gets all the care he needs quickly. He is stable now so we are waiting on a room.

I JUST KNEW HE WOULD BE BACK :(


Poor Isaiah is going to be 7 on friday so no celebration this weekend.

Far From Boring

Avery came home on Friday morning and things are been far from boring with him. He was a little junky before leaving and Children's would have gladly kept him there b/c they suspected he still had a bit o pneumonia. As far as I was concerned I wanted out of that place and felt comfortable handling Avery at home. He was so exhausted on Friday that he fell asleep at 3pm and did not wake until 8am. We put him on BIPAP b/c he was breathing fast. Well the poor kid woke up in the morning with huge blisters all over his face from the mask. He usually does not wear it that long but his body really needed it.

On Sat. he was a complete wreck. He was really working hard to breath despite suction and nebs. I was very close to calling an ambulance but I was able to stabilize him for the night. He continues to be really conjested but better than he was on sat.

I have just so many emotions going on right now: Frustration, fatigue, worry, scared, angry. It seems right now every way we turn there is NO good answer for Avery. He is colonized with a couple of big infections that can ultimately kill him. The side affects of putting him on long term antibiotics is far worse for his body. He needs a central line to survive and yet he is colonized with this candida that lives in his gut. So we can very well be in the same situation we were last week only with a worse outcome. He also is colonized with this pseudomonas which is causing chronic pneumonias which can ultimately kill him. UGH UGH

It is all just scary stuff and I feel that he is just slipping away. I just cannot imagine life without this little guy. But it is the reality of the situation. All it takes is one bad infection and our lives will be devasted.

I'm sure tomorrow will be a better day but for today this is just what I feel and it SUCKS. This kid did not ask for this and neither did we but it just IS.