So we were all set to head home, WHEN all of a sudden Avery decided to aspirate on his secretions and now he is super junky and been struggling to keep up his o2. So instead we are heading upward to the ICP unit. Up is not good, down is much better here. I am getting less optimistic that Avery will not spend another birthday in the hospital. I just will not miss Janessa's opening day of softball though. She is really good and is so excited about playing. It is great for Rick and I to have a kid really enjoying sports and able to cheer at her games. Avery will be fine as we have caught things early on but it just stinks that we come here for a quick ER visit, fix one problem and end up with another. KWIM?

Guess where I am?

With Avery of course. For the past few days he had been vomitting everytime meds were given. Monday was pretty significant, he vomitted about 5x but when he does this he gets really junky. I called the GI dr. and was concerned that he may have some type of obstruction so I brought him in. I honestly thought I would be home in the evening. Well silly me!!!! Here I am still sitting in the hospital.

All xrays were negative for any obstruction. He did vomit for them with meds each time so of course when they see it, it is much more concerning. There really is not many options or wiggle room to change anything except try to decrease the volume/concentration of his meds. But again that is a fine line. For now we are trying him on zofran (anti-nausea med) before each med dose. We will see. Tetwhey just ultrasounded his gallbladder and everything else in between and I suspect that is fine as well.

He also started to get junky and has a bit of green tinge to his secretions which is usually indicative of pseudomas, UGH. Let's hope not. I am hoping it is just a 2 day stay. It is Avery's birthday on Sat. I really don't want to spend another one of his birthdays here. Last yr. on his bday was a very bad experience and he got really sick. Of course with all this Swine flu craze I am freaking that my kid will get it. Remember I was in Mexico over a month ago. I know I am just a paranoid mama but if Avery or Isaiah got that it would kill them. Just very scary.

Boy Sat. was a crazy day. For once it had nothing to do with the kids. It was Billy the dog (the one you see in the pictures with the kids). This is grammy's new 6 month puppy who is very skiddish as he has already lived in a couple of homes in his short life.

Janessa was taking him for a walk on his leash. He heard another dog barking and suddenly came loose from his leash and bolted like a bat out of hell. Poor Janessa was screaming and crying after him. There was no stopping him b/c he was so scared. He bolted into a wooded area which is an open field to goes back about a mile. Connecting to the field is a park and beyond the park is a main drag (very busy). Everyone was searching for poor Billy. After over an hr. of searching for him, we get a call that a puppy is stuck under a van in front of Burger King but on the main road. Rick got there first and sure enough he was stuck and apparently had run out into traffic and the cars must have stopped (THANK GOD)and he ran under the van.

Rick had to pull him from under the van but the poor dog was so scared that he started to bite the heck out of Rick. By the time I pulled up with my mother in law (MIL) there was quite a scene with cops and a crowd of people and a van stuck in the middle of the road. Rick had the dog in his arms and I was sure that the dog was dead. My poor MIL was beside herself. Would you believe after all that drama Billy was fine. He must have twisted his leg but the vet said there was nothing broken. I just cannot even imagine how Janessa and my MIL would have been had the dog died. Poor Janessa kept blaming herself and was so traumatized by it all.

Needless to say, billy will be on a harness from now on. The crazy thing is I have never had a dog and don't know the first thing about them and was combing the woods looking for him and would not even know how to pick him up. These animals really have a way of making you fall in love with them.

So our only drama this weekend was dog related. The boys are doing well. Avery seems to be fine. I am interested to see what his labs show tomorrow for his liver enzymes. Keeping my fingers crossed that it was just a fluke and they are fine this week.

It was a gorgeous weekend and I am so grateful that I was able to enjoy it in my home.

So far so good. Avery is doing a pretty good job at handling his secretions. He slept good last night and looks a little lethargic this am but still no fever. Although he typically likes to go to the hospital on a Friday night. Hopefully he knows it is going to be a beautiful weekend and we don't want to be cooped up in a hospital :)

Will keep you all posted but as of this morning I am thinking he is manageable at home, just wish we could get an antibiotic before he gets worse.

Anyway, hope everyone has a great weekend. Spring Cleaning going on here. Time to get rid of all the clutter.

Did I mention Avery is going to be THREE next sat. Boooohoooohoooo.

Yeah, like I said. Something is definetly brewing and I am pretty sure it is another pseudomas pneumonia (a bacteria that lives in his lungs and becomes symptomatic often). He is quite junky today but managing his secretions. He has been needing O2 at night and increased suctioning. Man I wish I could just call someone to give me a damn script b/c I have been right every time about this so I can avoid the hospital. We are at such a frustrating point right now with the drs. b/c NOBODY wants to "own" Avery. They just keep passing the buck. Even the Complex Care team has basically thrown their hands up saying since he is on BIPAP he ends up on ICP (stepdown ICU) so they don't really see him. Which is complete bull****

We actually have an appt. with the Complex Care team aka CCS on thurs. so we can iron out these things but in all honesty, nothing is going to change. Because when you call an on-call dr. with a kid like Avery, they just send you to the ER anyway. I am trying to keep him OUT of the hospital to avoid all of those horrible germs and we manage him well at home and know when to bring him in. KWIM? Just one of my many frustrations. So I know the progression of things and if/and when Avery gets a fever then he will get really ill and will go in at that point. Hopefully we can avoid that but I highly doubt it.

So in preparation, I have done most of my hearing aids for the end of the month crunch LOL, in case we go to the hospital. I will keep you all posted.

Something is Brewing

With Mr. Avery. He is acting fine but the nurse from our home care company called me to let me know that the labs they did on Monday were a little off. A nurse comes every 2 weeks and takes labs from Avery's central line to monitor his TPN. His white count was elevated (indicates an infection) and his liver enzymes were also elevated as well as his glucose. So all of this can indicate an infection/virus. He has been having alot of difficulty at night going to sleep and has been requiring alot of suctioning at night which is not his norm. So I am thinking he is going to end up with a pseudomonas pneumonia again. Hopefully not. If he ends up with a fever then I will know. He also has been needing some O2 at night so this is always an indicator for us. I am also a little concerned about his elevated liver enzymes b/c it is related to his TPN (IV food). This is always a major concern for kids who are on TPN fulltime that there liver is having a hard time with the TPN. I am sure I am being paranoid but we are only 5 months on TPN and this is Avery's ONLY source of nutrition. The nurse told me if they stay elevated then they will have to decrease his lipids which is his primary source of fats. We would be screwed if we already are needing to deal with liver issues this early in the game as this is the last way Avery can be fed.

Again this could just be paranoid, crazy mama but it is always in the back of your mind that you will number 1, lose your central line to an infection or that the liver will start getting into trouble b/c of the TPN which eventually happens. So I am totally venting here and am sure that it is elevated b/c he may be brewing an infection which is the better of the evils. Or maybe it is nothing at all, right!!!!

Will keep you all posted. Rick came home today and we happy to have him back :)