You have Got to be Kidding Me!!!!!

Ahhh!!!! So Avery woke up this morning with a fever. He has not even finished his course of antibiotics for his pneumonia yet. Anytime he has a fever over 101 we have to call the hospital b/c of his central line and the risk that it could be infected is ALWAYS a concern. We called the team and b/c he is on antibiotics the blood cultures will be off so they wanted to wait 48hrs to draw them. Well tonight he is already at 103 and breathing fast and his heartrate is high. I know all this goes along with a fever but for Avery is causing a metabolic acidosis which is dangerous for him. Thank god I have a night nurse tonight. Otherwise I would be up all night giving medication to keep down his fever and paranoid all night.


Tomorrow is going to be crazy b/c both boys have their IEP school meetings. There are a few issues to be addressed at Isaiah's school. You know how I have been saying that he has a bad rash b/c of his antibiotics. Well we also know he never cries. Well he was crying the other day b/c he was sitting in his wheelchair and his nurse told his aide that he needed to be changed and the aid said "he is just being behavioral". Oh you know I want to beat down the woman and am gong to try my best tomorrow to be calm. Turns out he did have poop and his poor butt was red. Grrrr. So it should be interesting what explanation they give about this one.


Let you all know how things go. If you don't hear anything for a few days you can pretty much assume we are in the hospital. Hopefully that is not the case but you never know.

Hey all, things have settled down in terms of how the boys are feeling. Avery sounds wonderful so the abx really have helped him. He is a little fussy and spasy during the day b/c we are weaning him off the valium and ultimately increasing his baclofen but we have to do one at a time so we are trying to make him comfortable with the tradition tylenol/motrin which seems to take the edge off a bit. He is looking like such a big boy these days. I cut his hair and he is really getting long. I put on some of Isaiah's old jeans and shirt on Avery (size 5 shirt and 3t pants and they fit fine) :(

Today I spent about an hr. with the school nurse and psychologist going over Avery's history since he will transition out of early intervention and into the school system in a 2 months :( When you have to verbally give his history of the past 2 yrs. it is soo overwhelming. I just cannot believe what this little guy has been through, it is unbelieveable. He is such a fighter.

Some good news is he has FINALLY gained a few ounces on the TPN (IV food), this is wonderful news. He will be so much happier now that he is thriving. It is just sad to think that this is our last way of feeding him and if his liver starts showing signs of illness then we are screwed. Let's just pray that it is no time soon, like yrs, and yrs. from now.

Isaiah sounds wonderful. He really needed the abx but his butt is still taking a beating though. He just poops about 10x a day so it is difficult to keep up with. Poor kid just cries and thrashes everywhere. You end you getting buttcream everywhere. It doesn't help that he is getting wilder by the day. My nurse was saying how it is like playing cat and mouse just to give him nebulizer treatment. It gets very exhausting. He just kills me b/c he is so normal in some ways and knows how to get what he wants.


So I know I need to start posting some new pictures. I promise some are coming soon. Been having problems with my computer reading my camera. I promise soon though.

CONGRATULATIONS TO THE GIRLS CENTRAL CATHOLIC BASKETBALL TEAM!!!!!!! THEY WON THE STATE CHAMPIONSHIP LAST NIGHT
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I think we are on the mend here. Avery sounds so much better. He is doing well, thank God. I took Isaiah to the drs. yesterday and his lungs were clear but he still had a fever and sounding very junky. The ped. finally presribed some antibiotics. Bad thing is that his butt is already super raw and with the antibiotics comes constant diahrea. Poor kid screams everytime you change his diaper despite lubing him up. I hate to see him cry, you know he must be in serious pain.

Hopefully by the end of the week both boys will be back to their normal selves. Would be nice. So sick of sick kids and hospitals. Momma's gotta work and make some money. At the end of the week both boys have back to back IEP (school meetings) so that will be a crazy day. Still can't believe Avery is going to be 3 and a school aged boy. So sad.

Basketball is over which means it is time to put Rick to work, hehe....

Our new countertops were put in and they look great. His father is in the process of installing the new microwave above the stove. Can't wait to see it all come together.

Other than that things are same ole same ole for us. Just waiting for spring to hit.

I have to apologize to my blogger readers as I have not been a very good blogger.

We came home from the hospital with Avery this afternoon. It was a short visit. Which is always great. I tell ya, Avery has the best timing b/c he let me go on vacation and went downhill when momma came home. What a good boy.......

He was diagnosed with pseudomonas pneumonia which is what he gets often. The pseudomonas is a type of bacteria that lives in his mucous and when he gets sick it becomes active. His secretions get very thick and difficult for him to handle. I thought he was coming down with this prior to my vacation and begged the pallative team to call something in. Which they thankfully did, however it was not strong enough for him. By the time I got to the ER he was in rough shape and was transported to Children's. Sad thing is EVERYONE knows him so well down from the transport team to the ER to many people in the hospital as we are such frequent fliers and also because Avery he so darn cute. Hehe

He responded really well to IV antibiotics and sounds as good as new. Now Isaiah on the other hand sounds horrible. As you may have noticed, he has had a really rough winter. Poor kid has missed so much of school. He has also been lingering a horrible cough and it has now settled in his chest. I am bringing him to the drs. in the am as I am worried he too has pneuomonia. Didn't we say it is never a dull moment.


As for my trip. It was fabulous. I already miss sitting on the beach and looking at the beautiful blue ocean. The best part of it was getting a massage in a cabana on the beach, just great. It was a short but sweet vacation and I was safe :)

Tomorrow off to watch the Central Catholic girls become State Champions.

Thanks all for reading.

Never a dull moment!!!

Good News - Nicky made it back safely from her trip. She had a great time and was able to relax for a few days.


Bad News - Avery is heading back to Children's hospital sometime in the next few hours. Nicky brought him in for an appointment earlier today and basically was told by our pediatrician that they couldn't do anything for him and shoved us off to Lawrence General who then pushed us to children's.

I promised Nicky that I wouldn't alarm anyone with a dramatic post so the deal is that this is something typical that we see from him. He basically hasn't been feeling well and some of his labs have come back a little high. Knowing Avery he will bounce back in a day or so.

We are Home

And VERY exhausted. I sure did not expect to stay this long. I truely thought we would be out by Friday the latest. Should have learned by now. The week started out pretty good with Avery not needing to be sedated and getting some answers from the testing. He kept running fevers so they were needing to check labs to make sure his line was not infected. I think he just had some virus that was everywhere in that hospital.

We are in a major catch 22 now. Currently, Avery is getting all of his nutrition from the IV (TPN)and like I have said in the past, this is not something you want t be on longterm b/c it can kill the liver. So the goal ALWAYS is to keep feeding the gut with the feeding tube. We tried the one med. Avery could you and it was a total bust. After only 2 doses he was screaming in pain for a couple of hrs. So needless to say he will not be taking that. So we are left with nothing to help increase his feeds. Metabolism also informed me that he is at his maximum calories on his TPN.

So what does this all mean in laymans terms? We are screwed if Avery cannot gain weight on his new TPN. Or if by some miracle he starts tolerating more j feeds then we are in a better place. ALso he is severely anemic and this is why he required a transfusion. Because he is not getting formula in his stomach he is not getting the iron he needs. We are trying to give it in his stomach to see if that helps but we all know what iron pills do to your system. So we will see how long this lasts without its own complications. This would mean that he would need to get regular blood transfusions or IV iron infusions which we are debating about.

Basically we give him meds to help something, then we have to give another med to offset the side affect of the med. we just gave. It is sooo very frustrating. I am just praying that he is able to gain and get the adequate nutrition on his TPN and slowly increase his j feeds. Just one day at a time I guess.

I have not mention that during this whole time, Isaiah has been home sick as a dog. He has a nasty cough and the ped. who I think is clueless and useless at this point would not call anything in even though I was just there with Isaiah a week ago. Knowing that I have been in the hospital with Avery. Grrrrr.

I am leaving in a couple of days I will be safe :) as I am getting people asking about the whole drug cartel thing. We are 4 grown women not spring breakers. We will be fine. Just cannot wait to sit on a beach.

Thanks for all the prayers.

Update from Dad

Good News !!!!

Avery responded very well to the blood transfusion and perked up to his normal self this morning. He is smiling and feeling good at this time hopefully will be coming home soon.

I hope I did not mislead or scare anyone with my "comatose like state" cmment in my last post. I did not say that he was in a coma but was trying to say that he was out of it for a very long period of time.

I will keep you posted.