Good Day...

Today was a fun day here at duPont. They had lots of activities for the kids and both Madison and Gavin were able to dress up and trick-or-treat throughout the hospital. Gavin is doing pretty well but his swelling, which is causing his difficulty breathing, is getting much worse as they didn't want to give him any lasix today because they feel that most of his breathing discomfort is from his swollen organs. He has been sleeping now for almost 5 hours -- which just like yesterday has me feeling a bit uneasy. We are hoping to be home on Monday -- but we will just have to wait and see.

Our friend Alex who struggles with some of the same issues at Gavin became a TV star today. Click here to see his dream come true!

Way to go Alex!

Update...

Today has been a rather quiet day. This morning Gavin's doc came in and asked if Gavin was going to be the Marshmallow Man for Halloween -- he is so swollen and still very pale. They gave him another round of lasix this afternoon which helped pull some more fluid off his body. He seems to be in good spirits but we can tell he is still not feeling well. Today he took a four hour nap, which is not typical in the hospital since all he does is sit in his chair all day -- just goes to show what a rough day yesterday was.

Madison and I were able to sneak out late this afternoon and spend some time outside the hospital, even if it was just right down the road. They have lots of activities for the kids tomorrow so I'm hoping it will make the day go by fast.

Thanks for your prayers!

Update...

Once again our bionic boy has shown his great strength once again. This morning he is doing much better and is up sitting in his seat this morning yelling my name over and over! His blood pressure stabilized after extra fluid and blood.

He still has a little ways to go but so far it looks like we are out of the woods!

Update...

Gavin continues to be very sick. We started having issues with low blood pressures and have been working to get them up with extra bolus' of fluid. Gavin will be receiving blood in the next hour as his counts has dropped. We already have a positive culture for gram negative rods -- the yucky type of bugs.

The plan right now is to continue all 5 antibiotic infusions, give blood, give lasix to help him pee, repeat all his labs and hopefully get him feeling better.

Thanks for your prayers and encouragement -- it makes this chaos a lot easier!

Admitted...

Gavin was admitted to duPont this morning with a high fever of 105.8. He is a sick little boy right now. Please say a prayer for Gavin as well as Adam and I's sanity.

Thanks!

Special Exposure...

Everyday you teach us something new -- 

The will to live.

The power of prayer.

Joy in all circumstances.

Peace in chaos.

Keep teaching me Gavin -- Mommie has a lot to learn.

To see more amazing children click here.

Good To Be Home...

We were able to come home yesterday evening after Gavin received his blood transfusion. His cultures never grew anything but that's not always a good thing. It's it much easier to treat if we know what we are treating. We all fear that this is the fungus messing with us. Sometimes in the early stages of fungal infection, at least for Gavin, it can be hard to grow on cultures and we just have to wait and see what happens. Gavin continues to retch and sometimes vomit his meds, so either his belly has further deteriorated or he is fighting a bug -- I'm hoping for the bug.

We talked about putting Gavin on the IV Ampho on a more permanent basis but it that happens we would have to accept the consequences like liver and kidney failure as well as a super bug that we would not be able to treat. The doc just kinda threw it out for us to think about.

At the end of November Dr. Schoffner from Atlanta will be coming to duPont and although he cannot actually see any of the patients he is willing to review Gavin's history and speak with us and make recommendations. Dr. S is well known in his study of Mito and Metabolic Disorders.

Thanks as always for praying for our family!

Update...

Things are about the same here in Delaware. Gavin continues to be fever free but we are seeing his belly swell and also his blood counts are dropping. We are thinking he will need transfusion tomorrow morning. The doc today feels this is a flare of his MAS that we are seeing and that if the cultures remain negative tomorrow we may be able to come home after his blood transfusion.

It has been a very boring day here. Right now we are trying to get both kids to take a nap. What are the chances of this happening?

We'll see.

Update...

It's been a very quiet day today. This morning was very difficult as we left the hospital to attend Ally's funeral service. We didn't actually make it very long at the service as it was just too hard to separate our own lives from the events at the service.

Gavin is doing ok. He continues to be fever free but still looks very bad, which has us concerned. We are continuing to watch the blood cultures and he is currently on four different IV antibiotics/antifungal to cover any possible infection.

Thanks for thinking of our family today.

Admitted...

Gavin was admitted this evening to duPont. He is actually doing well. His fever is actually gone so we are just waiting to see if cultures grow. He still looks pretty bad so I guess we will just watch his labs.

Please keep in prayer the Heintz Family as they lay Ally to rest this weekend.

Waiting...

Gavin has started with some high fevers. He is loosing his color and we can just tell his body is getting tired. Adam and I are now in "waiting mode," as we both know that our great time at home is coming to an end.

So many times we find ourselves just walking the routines of life. We get up, go to work, come home, eat dinner, go to bed and then start the cycle again. Even in the business of life it is so important to make the time for making memories.

We have had an amazing two weeks at home, two amazing weeks.

Thank you Lord for giving us a break -- even if it was just some time to breathe.

Sad Day...

Please pray for Jill, Shane and Ashley Heintz as they deal with the loss of their little girl Ally.  

Our hearts are so sad today.

Good Times...

We have been home seven days -- yahoo! We have had a busy week but we are all loving every moment. Gavin is doing pretty well and seems to be responding very well to the anti fungal medication, or Amphoteracin he is on, as he has been fever free all week. Our main concern right now is that his liver is having some issues. His bili, which is one measure of liver function, is quite elevated causing his eyes to be a little yellow. This may in part be due to the medication he is on, which caused his acute renal failure last month. Hopefully we will see some improvement in his labs next week.

Thanks for continuing to think of our family! 

Here's to another week of memories...

We are...

Home.  Yes -- that's right, Gavin got his new line today and we are now enjoying the comforts of our very own home!  Thanks so much for all your prayers and support.  This was a tough stay for us, but knowing the incredible support surrounding us made it much easier!

Remember no news is VERY good news!

We Are Still Here...

It's been a long and difficult day -- there is no denying it! We were originally told that we would be leaving today and then this morning we learned that the final reading on the fungus has not come back yet, which means we don't really know what exact anti fungal Gavin should be on and also means that a new line cannot be placed. We spent the morning down at Child Life where a very odd yet friendly clown playing somewhere over the rainbow on her miniature violin almost sent me into an emotional breakdown :)

It was hard to tell Madison that she wasn't going home, I even think Gavin was bummed. Adam took a half day to give me a much needed break outside the hospital, which I enjoyed but in reality -- I couldn't find a darn thing to do.

So I came back.

The "plan," which neither Adam and I believe, is to have the line placed tomorrow. We have an OR time of 11am. We'll see if it happens.

Hopefully my next update will be from Good Ol' Home.