Lots of Stuff...

I'm not even sure where to begin this post -- so much to say.  I guess I'll start with an update on Gavin's inability to tolerate anything in his gut -- nothing has changed.  We had the J tube looked at and replaced.  Everything was in the right spot and even with the new tube place Gavin retched as they flushed to check placement.  We were really hoping it would be an easy fix but sadly we were wrong.  

Gavin is now growing fungus in both lumans of his central line and we will need to be admitted in the next day or so. If Gavin is still not showing signs of sepsis we will attempt to lock his lumans with Amphoteracin as well as treat the systemic infection with the Ampho as well.  If he is looking at all like he might be headed down a bad path we will pull the line and replace it with a temporary femoral line.

Yesterday we had our big appointment with the Mitochondrial Disease Specialist, Dr. Schoffner from Atlanta.  We were really hoping that he would be able to offer some assistance but sadly he painted a very grim picture of Gavin's future.  He spent some time asking us how we thought "it" would go, which made it a little easier to discuss.  Everyone in the room agreed that at this point there really is nothing more that can be done for Gavin.  His disease is very progressed.  We were told that at this point anyone of these infections could be one Gavin will not be able to recover from.  Our selection of antibiotics is narrowing as Gavin's gut bacteria have become resistant to some of the most common antibiotics.  We talked about transplant and Dr. Schoffner strongly agreed with our decisions against an intestinal transplant.  Gavin was sick before he went into intestinal failure so the root issue would not be cured.  This was very comforting to Adam and I -- to hear someone whole heartedly agree with what we fell is best for Gavin.  Dr. Schoffner recommended stopping all attempts at enteral feeding as he feels Gavin's gut will not get any better and the more we push in the more bacteria will be pushed out.  He compared Gavin to a "leaky dike." --- nice huh? :)

Despite everything we were told it is so hard to think about the end. We still look at Gavin, and at times, we see a beautiful healthy boy.    Gavin is such a fighter and for all we know he could go on longer than us, his parents.  For right now we are going to work on keeping him happy and giving him the wonderful life he deserves.  We will still give him his TPN, give him transfusions as needed and treat each infection as they make themselves known.   All this news is nothing Adam and I didn't already know, and in some odd way Adam and I both feel comfort in just hearing is said from the main doc himself.  It's hard to understand but we are actually feeling somewhat better about things.

With all this said -- We still have firm faith in a loving God who has Gavin's life already planned out.  We believe that when it's time for Gavin to be with Jesus he will go.  He will be made whole one way or another.  

Adam and I continue to thank everyone for your prayers and support.  We are always in amazement at the outpouring of love we are shown. 

Thank you for taking our little boy in as your own -- in spirit and in prayer.  

Attention SBS and Mito Mothers...

I need some help.  Gavin has gotten to the point where he is now vomiting any and all meds going into his J tube.  Even with both bags left open to gravity he still is managing to bypass his gastric bag and vomit or retch the meds almost immediately after being given.  The docs have been unable to lead me in the right direction so I figured I'd turn to a better source -- other moms.  Even though most of us have great docs we all know that mommie knows best and we all have tons of tricks that work.

Even though Gavin is not short gut he is labeled as functional short gut because, well -- his gut just doesn't work.    For some better background... he is off all feeds due to this same issue of distention, screaming and vomiting.  We have tried Reglan, Erythromycin and his is on a regimen of Toby, Coli and Ampho for 15 days  and Flagyl and Nystatin for 15 days, which is used to cut down on overgrowth and translocation.  I've had a few tips on some other natural oils such as oregano and Omega 3 but -- we just can't get them down without them coming back up and making Gavin feel sick all day.

For now the docs have said to stop his meds and try to introduce them one at a time again -- this will not work as I try this at home all the time.  Some of his meds he really needs like the Actigall for TPN colestasis and also his Metabolic Cocktail for his metabolic issues.  The other's for the gut decontamination aren't working anyway so those I feel ok waiting on these.

We have also tried neomycin as well a cycle of IV Ampho, which put him in renal failure.

Any advice?

Fungus and Confusion...

It been a very confusing day to say the least. It started last night when Gavin did not sleep all night. Major red flag as Gavin tends to sleep way more than average. Still, at 2 in the afternoon he has not slept one wink but instead is in the manic mode. We also found out that Gavin is growing yeast in addition to the bacteria that originally grew.

With all that said -- we are going home.

Not that I don't want to get the heck out of here but I'm confused as this is not our usual protocol especially when we have a positive culture for yeast. I'm juts hoping that we will get home I'll take a nap and wake up to everything being back to normal.

Let's just pray I will not be driving back here again tonight with a very sick child in my car.

***sigh.

Update...

After we received our call telling us to rush Gavin down here to the hospital, his plan of care didn't actually change until 11. A bit frustrating but at the same time I really do completely understand their concern -- it's just hard to process in the wee hours of the morning.

Anyway, we had a fairly uneventful day. Gavin has been just hanging out in his chair and is once again giving us the "silent treatment," which we think is just his way of reserving his energy and trying to deal with his illness. Who knows. It's a little sad and scary at the same time -- his body seems to be wearing down these days.

Madison and I had some girl time this evening and went on a date to the movies to see Bolt. We only stayed for half the movie as we were both so tired but it was nice to spend time with my baby girl!

The plan right now is to wait and see what happens. We found out that the bacteria that Gavin is growing was resistant to the antibiotic he was on so now we just need to make sure we can clear this infection with the new med. So far Gavin's MAS has not showed it's ugly head with this infection -- lets pray it stays that way.

Thanks for your prayers!

And We're Off...

We got a lovely call from duPont at 3:30 am telling us that Gavin's culture that was drawn at 2 was already growing out Gram Negative Rods despite Gavin being treated with the Cefepine.  

Great.

We are on our way down to be admitted -- less than 8 hours ago we left the hospital after Gavin finished his blood transfusion.

Positive Cultures...

We got a call this evening saying that Gavin's blood cultures are growing gram negative rods -- the bad guys.  I assume that since he is not overly sick we are going to treat him at home, but that could change.  He also is in great need of blood, so we will be heading down on Friday morning for a transfusion.  

I'm hoping that after a few doses of the antibiotic he will start to perk up.  

Thanks for your prayers.

Blood Cultures...

This morning cultures were drawn to see if we can find out what bug is causing these fevers. Gavin is not really acting sick but just not himself, very tired and pale.  His doctor said he will probably need to come in this week for a transfusion.

Thanks for your prayers.

Fevers...

Gavin's fevers are getting worse and we are now on unofficial standby for our biweekly crisis and trip to duPont.  Please pray that Gavin's fevers would make up their mind and either come on full bast so we can start treating him and get on with our lives or just go away.  

This is the worst time of our cycle -- living in limbo...

Overdue Update...

I know -- it's been awhile.  We have been home now for 8 days and things are semi quiet.  Gavin is still on all three IV antibiotics and is still breaking through with fevers.  I'm a bit anxious what the end of this week will bring as the meds end tomorrow.  

Gavin has been doing well for the most part but I can tell his little body is so tired.  He is so hard to read at times because even when he probably isn't feeling well he still pushes himself which results in him crashing downward.  He has been breathing very shallow and has been having some apnea spells, which just tells me his little body is very tired.  I'm thinking he may be in need of blood as his coloring is pretty poor as well.  

We have our appointment with the Mito Specalist on Nov. 26th.  I'm not expecting anything spectacular from this appointment, as we kinda already know there's not much we can do at this point but I guess I'm hoping just to hear a little confirmation like " oh, that's why he does that." 

I've been super busy which has been great -- allowing my mind focus on things other that Gavin and his medical issues and outcome.  We are thinking we will be admitted within the next week so I'm trying to fit as much in as we as a family can handle!

Thanks for continuing to pray and support our family.  I just can't imagine doing this alone.

Home...

After a confusing day ysterday, wondering when we would be able to come home -- we are finally home!  Gavin blood counts are low so they were a little hesitant on letting us go but then sided in our favor.  The hospital is not the best place to be with a white count of 2.

We are in need to some major prayers for strength.  Gavin is home on 3 IV antibiotics, two running ever 6 hours and one every 8.  This is lots of work, considering not only do we have to hook them up but also wait and flush them out as well.  He is on lots of meds down his tubs as well all which are making him vomit.  He is literally pouring gastric fluid out into his bags so we also need to pray his gut wakes up a bit.  His bottom is raw because at the moment he has no control over his bowels and the slightest movement "squirts" out very acidic stool onto his raw butt.

Please say extra prayers as well for our friend Zoey who has just been diagnosed with Acute Myeloid Leukemia as well as our friend Alex who was admitted last night with fever.  Please go to their sites and let them know you are thinking of them! Do we even realize how many kids out there are fighting everyday for life?  

We have it so good.  

God these kids need a miracle -- a break.