Update...

Today I was able to rescheduled Gavin's appointment at St. Christopher's in Philadelphia at the metabolic clinic.  He is penciled in for the 7th of August and I am prying that He can be home so we can go.  Adam and I are feeling more desperate for this appointment than ever.  We need some direction as to his condition in order to make a more informed decision on going to Pittsburgh.  The transplant evaluation in an invasive 5 day inpatient stay and I don't want to put Gavin through that if we feel transplant is not in Gavin's best interest.

Gavin started with a fever today of 101, which really isn't very high but still is raising my stress level.  His gastric output is high and very smelly, which just screams infection.  We just need some time here at home.  I don't think any of us have actually adjusted to being home yet and it has been 4 days!

Thanks for your continued support and prayers!

Update...

We are home. Gavin is looking better however we were not able to keep him on the antibiotics -- for now. We may start doing random blood cultures to try to "catch" the bacteria when it is in his blood so we know what we are treating.

I had another long talk with one of the Diagnostic Doctors and she was was very helpful in clarifying a few things for me. I will not go into detail, especially since I'm trying to organize it all in my own mind. The one thing that I did walk away with was the reminder of how precious each day with Gavin and Madison is.

We are home for now and there will be a discussion between all three doctors this morning as to what we can possibly do to keep us home for longer than a week.

Update...

Today was another rather quiet day. Gavin 's energy levels are slowly coming back and he is acting more like himself. His blood levels all took a pretty hard hit overnight so most likely he will get some blood tomorrow, which will make him feel even better. I talked with the doctor today about possibly keeping Gavin on the antibiotics for a 10 or 14 day course even though his cultures are negative. He responded very well the Vanco and Cephapine so we know that there was some kind of infection going on. The negative side of doing this is that it will place Gavin at an even greater risk for the fungal infections he is already prone to. I'm looking to give him quality of life outside the hospital but Adam and I are also very aware of the risks. The docs are going to talk about it further and we will find out tomorrow.

We enjoyed some time out on the balcony this evening and made time for the photos. Madison had fun entertaining us and another family with some hip-hop dancing and a few cheers as well! We hope to get out of here in the next day or so. Tonight is a lipid night so please pray for no fevers from lipid, which would only complicate things!

The Latest...

And the latest news is -- absolutely nothing! Dr. M did come around later in the day and unfortunately didn't really have much to say. He saw that Gavin's spleen is very large and firm as well as tender but we really don't fully understand why this happens especially when his cultures are still negative. His fevers are slowly going away, in fact his last temp was 100.0. Gavin has only put out about 40cc's of urine in the past 24 hours. Yikes! We attempted a bolus earlier in the day but it only made him poofy so now we are giving another bolus along with a round of lasix to try to pull off the fluid.

In summary, we had a very boring day and now we need to see some pee!

Frustration...

The time is now One O'clock and I still have not spoken with a doctor -- so frustrating! Gavin is doing better but is still running some low grade temps.

Can someone please just come in this room and tell me what the heck is going on?

We Are Back...

Gavin was just admitted to duPont for high fever. I'll be sure to update in the morning after I speak with the doctor.

Same ol' stuff...

Busy Week...

I have to be honest and say that this was not the week I had hoped for.  I absolutly treasure the time I have at home with my kids to do things like go to the park and pool.  When things interrupts that groove it frustrates me to no end. This week we have spent everyday at duPont tying to save Gavin's brand spankin' new central line.  Today we are going back once again to give a last effort before the line is pulled and Gavin has to go to the OR for another.

To make matters more frustrating Gavin is running a fever again and has been all week-- as always things are exciting.  On a positive note we received approval fro Gavin's wheelchair -- now we just have to wait until it comes in.  I am so ready to ditch the stroller as it is just a pain in the butt to maneuver with all the equipment hanging on the back.

Keep the prayers coming -- I have a feeling things are about to get even more exciting.

Flashback...

Please stop by Alex's site and give this family an encouraging word as he is going in for surgery today -- see the details here.

Home Sweet Home...

We are home! Thank you to all who have supported us once again -- we have to best Friends and Family around. Please continue to pray Gavin stays infection free. He is already having some temps this evening -- He just likes to keep things exciting.

Update...

Gavin got his new double lumen Central line late last night after 2 hours back in the OR. They had a difficult time placing the line due to the amount of scar tissue Gavin has in his chest from all of his previous lines. This is somewhat scary as we know that eventually we will lose a spot to place the line.

Gavin finally got his blood but is still not himself. We have been giving him morphine as he seems to be is a lot of pain but we are thinking something else is still going on. Today we are coming off all the antibiotics and antifungals and we will see what happens. If everything stays the same we will be able to come home tomorrow.

We will not be coming home on any IV meds, which just really stinks. Gavin will be completely on his own to fight infection so we will need more prayers than ever. Also, his poor eye is still swollen shut and his body overall is still puffy. A pee-pee dance would be appreciated!

One Eyed Jack...

Can you tell by the above photo just how "great" our day was? We started out the day with Madison and I coming back into the room only to find Gavin covered in blood and 4 nurses trying to save his one and only IV -- it was saved, which was the only highlight of the day. Next Gavin decided kick the excitement up a level and surprise us all with a very badly infiltrated scalp IV, hence the above photo.

The major bummer of the day was the last ditch effort to save his line failed and we officially lost his Central Line. As we speak, he is back in the OR having a new line placed -- thank you to the OR staff for squeezing us in tonight.

He still has not received his blood due to lack of access and sadly he is really feeling the effects. Hopefully that will be first on the agenda once we get back upstairs. We should be able to come home soon as long as his fevers stay away.

Update...

After working hard on Gavin's line yesterday and throughout the night it still is not working. It looks like Gavin will have to have a new line placed, which just is so horrible. This line is only 2 weeks old! As a last dich effort we are going to try some Hydro Chloric Acid to see is we can "eat" the crud off the wall lining -- We'll have to see.

Gavin is still looking pretty bad. Fevers are still gone and cultures are still negative. I talked a little more with the GI Attending about the idea of Gavin getting a bowel/liver/stomach transplant. She was very comforting -- if that's even possible in this situation.

We did have an appointment today with a Mitochondrial Doctor at St. Christopher's in Philadelphia but unfortunately we had to cancel.

Thanks to all our new friends that are praying for Gavin! Thank you to all who made us meals for this admission -- they have all been very yummy!

Update...

Not too much to report. Gavin's fevers are down but he is still not looking well. He is still very grey and lethargic. As suspected his blood counts took a drop so he will be getting some blood and possibly platelets. No growth on the culture, which is just not all that comforting considering how sick he was.

The biggest news of the day came at 3:30am when Gavin's central line clotted off during blood draws. His veins are so unhealthy that all 10 sticks blew almost instantly. We finally found a nice spot in his scalp, which so far seems to be working. There is a huge risk de-clotting the line with the possibility of showering his blood with possible bacteria hiding within the line. This has happened in the past so I have some fear about doing the TPA.

Thanks so much for the overwhelming support with this admission. Gavin had almost 500 hits to his page yesterday -- that's 500 possible prayers for our little boy.

I'll update tonight if there are any changes.

HIgh Fever -- Take II

Once again Gavin spiked a high fever of 104 and we are off to the hospital -- for real this time. He really scared the pants off me this morning.  This doesn't happen often but every once in awhile he looks so sick and so many thoughts run through my mind.

The fever is down now, thanks to Motrin  but he is completely grey and lethargic.  As soon as Adam arrives to take Madison, Gavin and I are off the DuPont.

Please say a prayer!  

Chnage of Plans -- For Now...

Yesterday I spent the majority of the day packing and getting meals ready for our trip to the hospital. Yesterday evening after I had come up from packing the car,  I went to take Gavin's temp one more time and ---- the fever was gone.

Normally you would think I would be very happy about this right?  Well not really.  All it means is that we have to unpack a weeks worth of life and repack it again in, most like, the next week and do it all over again. Sometimes I just wish we could get it over with, get back on IV antibiotics and have some safety.

So here we are.  At home, trying to just remember to live in the moment and not play the "let's-wait-and-see-when-Gavin-will-spike-a-fever" game!

Thanks for your prayers.

Fever...

Last night Gavin spiked a fever of 103.  It came down to 101 this morning so we'll see what happens during the day.  We will most like be going down today.

We'll keep you posted.

Prayer Needed...

***Update: Alex's surgery had to be rescheduled. Needless to say Alex is happy. I'll post this again when I hear he is going back again.

Meet Alex -- He is an amazing little boy who is fighting against a terrible disease -- Mitochondrial Disease. Today Alex is going in for surgery to have his tonsils removed, which may sound like a fairly simple procedure but for Alex it really can be life threatening. Alex has major issues with general anesthesia as well as significant respiratory issues. He will be admitted to the PICU after surgery today.

Please lift this special family up in your prayers today. Pray for Peace in Alex's little mind as he completely knows what is about to happen and is scared and anxious. Leave a message of encouragement on his page linked on the right side of this page.

Gastric Explosion...

Yesterday while out and about Gavin's GJ tube decided to explode all over my lap, so needless to say today we are making the dreaded trip down to duPont to have a new tube placed.  With this said we need lots of prayers over Gavin today. Whenever Gavin's bowels are "disturbed"  the will get angry and spread infection into his blood.   Pray the Gavin will be infection free over the next 24 hours.  

Gavin is still hanging in there.  We are trying, as always, to enjoy our time at home as much as possible. Sadly I can see that his little body is tiring so we'll see what the next week brings. Thanks you for the outpouring of love we have been shown this week.  You know who you are and we are so thankful to have your support and love!

Shark Attack...

We are home and very happy to be getting back to our "normal" life.  Gavin's IV antibiotics and anti fungals end today -- a huge bummer.  Gavin is now on his own to fight infection, which we all know by now that his bugs tend to win.  Gavin is doing ok but has been struggling to recover from this last admission.  He has been extremely bradicardic, low heart rate, which is scary for Adam and I when his heart monitor just doesn't stop alarming.  

The plan of action right now is basically to continue to avoid infection, which really we have no control over.  We are also trying to see a Dr. at St. Chris's in Philadelphia who specializes in Mitochondrial Disorders.  The wait for Gavin's wheelchair is growing long so we are hoping is comes in the near future.  Our Docs are also still working on getting us out to Pittsburgh for transplant evaluation, though we still are up in the air about that whole situation.  Please pray we can stay home for at least a week or so -- I'm just not ready to go back yet!