Set backs

There has been a little set back.. Gator is holding onto a lot of fluid.. Everything is swollen "down there" so he can't peep it off.. He moved to the recovery floor for a couple of hours but needed more and more oxygen. He got to 12 liters and they needed to move him back to intensive care.. 

You can see in his little hand how swollen he is. We have put his folly catheter back in so it will come off better.. 

Once we get the fluid off him he should breathe and feel much better.. 

We really needed full face scuba gear. Now he looks really cool for his Navy Seal costume.

We've been healing up in here.

Gator is making great improvements.. He still needs lots of rest. He needs a bunch of oxygen because of the pain, his tummy still isn't awake so he gets an awesome meal of ice every two hours.. 

Yummmmm! 

He also got up to walk with PT, we just love these girls. They have really helped to find things Gator enjoys, so he thinks he is playing rather then working hard at getting better. 

This is the picture doctor Meyer drew to show us how surgery went. I mostly wanted to document it here so I have it in our book.. 

Today's plan of action and rest

Gator had a good night, he is having a little bit of blood pressure issues. Those are related to the pain he is feeling. He is trying to be stoic and not push his green button. We are trying to gently remind him that staying on top of the pain will help him heal faster. 

Our plan today is to let his tummy rest from food.. To let him sleep as much as possible.. And to make it a very quiet day. 

He was able to have his folly cath removed and worried all morning that he was without  "drawers". He told everyone at least a couple of times he wasn't wearing any. I brought up a bunch and pj pants, so he is back in business.. 

Our sweet friends the Dixons and the Kiesewetter's for your thoughtfulness.. It sure makes things better to have you in our lives. 

What a pain in the Aspergillus

Waiting is not something I am very good at. I have learned it is necessary, but I dislike it. Especially waiting to hear how things are going. I know most people might feel this same way. So I am doing a quick update so we can all sleep.

Gator boy did great. Doctor Meyers (who reminded me of my Auntie Mary in her manner and kindness) was amazing. Also, our anesthesiologist was fantastic. He said while he was taking care of Alex he would be his best friend, stuck to him and ready to do all that was necessary to keep him safe. 

Doctor Meyer explained that the liver is in 8 quadrants. They removed the entire #2 quadrant. Or the size of an orange. The liver was between hard and soft, bleeding was controlled and when we saw our boy he was even extubated. 

Recovery will be a long road, but we are so thrilled that he CAN recover. 

We are going to adjust our plans for our family trip. But I am so absolutely thankful he will be with us. 

I want to share that as trying as this has all been and as emotional as this has been. We still feel the love of our Savior. We are also comforted by the messages of love and prayer we receive. 

I am also thankful to everyone who help with the other children. My dad stepped in tonight and took Ry to activity days. 

Papa and Grandma Homer took some Chick-fil-a up to Gator last night.

These brothers hung out yesterday.. Gator can't wait for Asher to be big enough for Legos and race cars.. 

For all you patiently waiting folks..

Alex went back for his liver surgery a while ago and we just got our first update that they started about 20 minutes ago and everything is going good. 

Our next update won't be for an hour to hour and a half...

Here's what we learned...

This is and has the potential to be a very large and dangerous surgery. They will be monitoring Alex very closely and as always take such great care of him. 

They will be cutting a line from side to side and then from the center up toward his sternum. This gives them access and visual of the major arteries going and coming from the liver. This organ acts as a blood filter so imagine how close they are working to his amazing new heart. Normally they like to give these types of patients an epidural to control pain after surgery, but because of bleeding risks they will only be able to help manage his pain with a pump thing.. It's going to be ugly to wake up from.

The surgery itself will be to remove the infected portion. Unfortunately they need to feel the liver to see if it is hard as a rock or soft. Inflammation can cause it to go very hard. If it is hard trying to cut a rock is not going to go super smooth. They would most likely need to remove enough of his liver to including the inflamed portion. That is a total wait and see thing. 

He will still need his drain, PICC line, big art lines(neck) and we are planning on seeing him come out intubated. 

It all sort of socked us in the stomach. I just assumed we would be going in real quick to take this sucker out.. It's way bigger than that. 

Thanks for all the prayers. 

10/18/15

Alex had a pretty good night. He has needed a little oxygen at night to help his sats stay up. He overall feels like he has flu like symptoms. Tummy ache, fever, fatigue. This illness is really kicking his bum. I should note that this is not just the Aspergillus(fungus) but the rhino and noro viruses. We have been careful to protect his kidneys because they can get unhappy pretty fast on the two antibiotics. To further protect them, one of his antibiotics was changed to Voricanazole but then he stayed on caspofungin. 

His CT showed no fungi in his brain or nasal cavity. They did see something in his lungs but at this point believe it to be related to rhino. 

So far they have been able to remove about 148 mls of infection. I had someone explain to me in regular lady terms so I could understand how much that really is.. So 30mls (or CC's) is equal to 1oz. That is close to 5 oz of fluid infection. A cup is 8oz so a little more than half cup. Eeeewww right? For a little guy, that's a lot of infection. 

Alex will be having the surgery to remove the infected portion of his liver on Tuesday by Doctor Rebecka Meyers. She is THE BEST in the country.. Right here at our very hospital. Another blessing for our family. 

One question that keeps coming up; how in the heck did he get this mega fungus? 

Well, this is an environmental fungus that is in dirt, he could have breathed it in by being outside or inside (or upside down) it just is there. They say we can actually have these crazy fungi in our bodies, a immunocompetant person is able to keep it under control. Alex has such a weak immune system things like this can easily get out of control. So nobody "gave" it to him. We can't live in a bubble and we can't expect everyone to treat him this way. So we will do what is necessary to get better and keep living to the best of our ability. Every now and then get a serving of humble pie. 

Thanks for every prayer, text, call, email, visit, child care.. It seems we ask a lot of you all so much. Just know that we love you and are thankful to have you in our lives. 

10/17/15 (I couldn't think of a good title)

Alex had sort of a rough night. He had an upset stomach this morning, but seemed to perk up after emptying his stomach. Daddy did the SOJO bike ride without his Gator boy, this was supposed to be their ride. 

today was also supposed to be Lagoon day for Gator who worked hard in spelling. 

*sigh* he can do it next year. 

After talking to his doctors it sounds like we need to move forward with having to surgically remove the infected portion of of his liver. Also with this specific fungus it  spreads to other organs and parts of the body. Most worrisome is his nasal cavity, brain, and lungs. If the infection is in these places we will also need to take out or scrape out the infection. To help us  see where the infection is Alex went down for a CT. 

I know what you are thinking.. They are saying everything points to NOT having it in his brain. 

We don't have the results back yet. 

He had a nice big lunch and is watching a movie and taking it easy. He has been sleeping a bunch. This has really been a drainer.

Now onto the mending..