Just wanted to thank everyone for your continued prayers, they are certainly working.

We finally have an answer as to why Avery is so sick. He came back positve for yeast in his line. Of course this is not good. But it does explain alot. I still believe that this was all triggered from his IViG. He had a reaction which suppressed his immune system thus causing the yeast he is colonized with to become active. The timing is just too much of a coincidence to think otherwise. However the immunologist are the only who don't believe it. I had it out with the attending bc she told me I was putting my child's life in jeopardy by not doing ivig (are you kidding me , he is on a vent from ivig). We will deal with that later though bc right now I need to get through this crisis.

Avery us holding his own though , he is responsive to touch and kisses which is so reassuring. He got a second platelet this morning. They weaned down his vent setting during the night but then his chest xray looked hazy so they had to up his setting and he was becoming acidoitic. Another issue is his belly is very hard and distended. But with low platelets he cannot get and type of enemas or supps. At the risk of bleeding which is the same as why he can't get chest pt to help move secretions. Another major issue is whether they are going to pull the line or not. My choice is to treat through for now bc we are still waiting on more cultures. I don't want to rush into anything.

We are just taking day by day. Avery is a strong little boy. I will update as much as I can.

This will be quick bc I am completely exhausted. Avery got real weak and tired this afternoon. They called a code bc he desatted as low as 35% while on bipap. They ended up intubating him and he has settled in on the ventilator. It is the break his body really needs right now. He has some active bleeding and is not clotting, requiring a platelet transfusion which he got. He will also get another blood transfusion and some meds to help Jim clot bc this is our biggest concern right now. They have him well sedated so he doesn't fight the tube. Thankfully he seems comfortable which is so important right now. The next 48 hrs are gonna be big for him. Rick and I are so overwhelmed by everyones thoughts and prayers, thank you. I am certain that Avery will pull through this. I will keep you all posted.

He is one sick little boy

Avery's fevers finally broke last night and was was placed on bipap and had an uneventful night. This morning he wad still sleeping on bipap which is unusual bc he is typically crying to come off. At first I just thought he was tired from his day yesterday. But he was not rousable at all. They residents were nervous and ran labs. His blood gases were showing he is retaining CO2 and his platelets dropped to 25. That is critically low and not in the direction it should be heading toward.

His pallative dr. Was very concerned and thought he needed much more ventilation support. The other concern is he is in DIC which can be fatal bc you basically bleed out. He is showing signs of being septic yet all of his cultures are negative. The only thing he is not being covered for is yeast in his line. He will be covered with yeast antibiotics. So all in I am very scared and need prayers.

It's been a long day

Avery has continued to spike fevers continuosly since last night. The highest today was 105(I about had a heart attack). He has had numerous infections and been septic twice and has never been that high. Adding to the fact that he has slept the entire day away. I still believe it's from the IVIG and finally have the drs. Convinced of the same bc his labs are reflecting it. Also bc his blood cultures are negative. At this point, if I don't have a plan in place for the infusions I will not do them anymore. He is clearly getting sicker rather than better with them. I have honestly not seen Avery this sick in a long time (it's scares me). There are just too many mito kids losing their lives lately and you have it constantly looming over you especially at times like this.

I am sure my little man will turn the corner in no time. He sure knows how to keep us on our toes though.

As predicted!!!!

Like clockwork, Avery spiked fevers a few days after his IVIG infusion. But this time his fevers are higher and more persistant. He actually looks sicker than the prior three reactions. Adding to the fact that his central line site still looks irritated almost 2 weeks later, has me nervous.

Of course I was kicking and screaming heading into the ER this time as I am still recovering myself from surgery. The last thing I wanted to do was sit in an ER for hrs & sleep on a windowsill while still being sore. Ultimately, it's not about me and as a mom you have to put your kids first. I am glad I took him in when we did because he started to go downhill a few hrs into the ER. His temp kept coming back even with motrin & tylenol and he was laboring to breath. He has been in bipap since last night with 40% O2 which he hasn't needed that much O2 in awhile. He just looks sicker overall.

I am just praying this is not a line infection. I kinda have a bad feeling about this one. I should know later today. Please keep Avery in your prayers. Thank you.

All went well

There was a little change in plans. The surgeon called me yesterday to let me know that the CT scan did not show any hernia but a mass with restricted blood flow to my uterus. So I was certainly freaking out. But by the morning with Milo and Janessa in our bed I felt good about things(a calmness), my instinct is usually right :). The surgeon and hospital was great. She found the mass to be lots of scar tissue and endometriosis presses against my uterus which may having been causing the pain & limited blood flow. I'm in some pain but will bounce back pretty quickly. My only restriction is not lifting over 20lbs for a wk. I can definitely manage that.

Milo continues to be the cutest pup ever. Other than nibbling on everything, he has only had a couple of accidents in the house. He is also playing more with the boys but he is another one I have to watch with Avery's tubes. Ugh!!

The boys are feeling great. Avery had his IVIG infusion so we will see if he has another reaction this weekend. If he does than I am 100% certain it is due to the infusion. Janessa of course is sooo thrilled with Mili and is his primary care taker just as we thought.

Thanks for all the good thoughts.

Happy 4th of July!!!!!!

It has been a great holiday weekend for us. We picked up our dog Milo on Friday and instantly fell in love with him.  He is so sweet, cute and in love with Ness.  What a great little pup he is.  The boys love him but he is so into Ness that he will only sniff the boys for a minute then he is off following her.  What a cutie pie.  On the first night I fully expected him to be up whining all night but he slept beside Ness all night without even a peep.  So far he has only had a couple of accident but for the most part he goes outside pretty easily.  Overall, it was the best thing we have done for our family.  It's great to have a new little guy around.

For me, I am having my surgery on Wed.  I am definitely nervous and would love to back out but I know it needs to get done.  I am sure all will go well just hate being restricted.  Avery's central line looked a little icky this weekend so I hope and pray he does not get a line infection.  That would not be good this week with me being out of commission.  I will keep you all posted.