Admitted...

Gavin was admitted this afternoon to duPont after a horrible night of fevers. We are all so exhausted. It looks like it is the fungus but all cultures taken this week were negative. At this point it gets tricky because Gavin is on so many heavy duty IV antibiotics and antifungals that it can make it difficult for the culture to grow.

We have started Amphoteracin, which is a more broad spectrum antifungal. Hopefully this will at least give him some relief, until we decide if the line needs to be pulled.

We are all very tired and really need a good night sleep -- certainly not our ideal way to bring in the new year.

Thanks for thinking of us!

Update...

Things are very up in the air right now.  Cultures were drawn on Friday and again today but I still haven't heard anything.  I was assuming we were going to be readmitted this week -- but again I haven't heard anything, which is the worst.  Gavin was running a temp this weekend, but seems to be semi stable.  

We had a very wonderful Christmas.  Our family was so blessed by the kindness of others, both family and friends and by strangers.  We often forget how many kind and caring people are in this world.  Adam and I were both overwhelmed by the outpouring of love we have been shown.  I can't wait to get some photos together to show you all just how wonderful our Christmas was!

Positive Cultures...

This afternoon we got word that Gavin's blood cultures are growing fungus and a gram positive coxi, which is probably the same staph infection from his previous central line site. Certainly makes us sad but at the same time at least now we know what we are treating. Gavin is looking a little better after getting blood, though he still is looking jaundice and we were warned that he may even look a bit worse due to the increased blood volume.

Our plan right now is to go home in the morning. We will continue all three iv meds that are running now and also add the Amphoteracin locks to try to clear the yeast. The locks have never worked but they may buy us some time at home for the rest of the week. Unfortunately, because Gavin has yeast in his line there is always the chance that he will get very sick and need to come in to have the line pulled right away. I think at this point we will try to get cultures again on Friday and then decide from there what the next step will be.

I'm very ready to end this day. It's been a long one. Gavin is peacefully sleeping in his crib and Madi and daddy are safe at home. Now it's time for me to attempt a few hours of sleep.

Update...

Some days are harder than others. There are days I seem to forget the issues we are dealing with and I am able to just enjoy life and move forward -- this is not one of those days. I had a very difficult talk with Gavin's doctor this morning. I'm not going to go into details because it is just to complicated to write out -- not to mention just to painful.

Gavin is doing much better since we started the two antibiotics and one anti fungal. As we thought, he needs blood and he will be transfused this afternoon. His liver numbers are looking a bit better but still not good. His bili is still high and Dr. Raab kinda prepared me for the colors Gavin may start to turn in the future. If Adam and I are just prepared for what he is going to start to look like I think It will be a little bit easier. His liver is really starting to feel the effects of his long term TPN use, which is something that we were aware can happen.

Please say extra prayers for Madsion as well. As she gets older I think all of this is a little bit harder on her. I often wish I could be in two places as once. She is staying with my mom today, giving her a much needed break from Hotel Dupont.

For now we will just wait on cultures but either way, positive or negative, we will go home on IV antibiotics to get Gavin through the next week. I'll be sure to keep you all posted.

Admitted...

Gavin was admitted this afternoon to duPont. I'll be sure to update in the morning all the details.

Thanks in advance for all your prayers!

Quick Update...

Just wanted to post a quick update to say that Gavin is still running high temps.  It looks like infection to Adam and I but his cultures are still negative.  His billirubin is also way on the rise, which is giving him a scary yellow/green hue.  We are having to stop his fat in his TPN for now to try to give his liver a break.  His fat is his main calorie source so please pray that our, already little man, will not become a tiny man.

Thanks for your continued prayers.

One Week...

We have been home one week and unfortunately things aren't as great as we hoped they would be.  We noticed Gavin's color dropping over the last couple of days and his eyes are turning a but yellow.  Last night he started with a slight fever and now that slight fever has turned way more concerning.  We are awaiting blood cultures and were instructed to bring him in if he looks any worse.  We are really hoping to treat this at home -- if there is something to treat.  We have some fun plans this week and Adam and I will be really disappointed if those plans turn into a trip to DuPont.

This weekend we went to a Christmas party at Gavin's home care agency.  Toys for Tots sponsored some great gifts and even Santa, though a but off looking was there.  The kids had a great time.  Speaking of nursing, Adam and I have decided to take a break from our nursing care.  We are just really looking for some normalcy when we are home.  Thanks to both our wonderful nurses.  I know you read this and know that you have helped us through so many rough times and will never be forgotten!  

Home...

After many tears, frustrations and feelings of totally despair we are finally home.  Gavin got his new line early this morning and we were able to leave right after.  He has come home on three antibiotics one which ends in one week, one in ten days and the antifungal in three weeks.  Dr. R is going to come up with some type of plan to keep us home over Christmas, but obviously there are no guarantees.

We are now using Zofran to help Gavin with his retching, which I think is working but it's kinda hard to tell.  We are also using suction hooked up to his gastric tube, which I know makes a huge difference for him.

Thanks to everyone who continues to support our family.  Special thanks to our second family at duPont, who will never understand the huge impact you have on our lives on a daily basis.  We are so grateful to the compassion we are shown by the doctors, nurses and staff. 

Please, Let Us Go Home....

Adam and I have both reached our limit. We are ready to get the heck out of this place. It doesn't look like Gavin will be getting the line today. I'm so frustrated and disappointed. I feel like screaming to all the medical personnel in this place ,"do you realize you are taking another day away from our family!" I understand that everyone is looking out for Gavin but it's hard to see that sometimes.

Gavin's counts are still low and his belly is still swollen. We are going to be cutting his lipid in half tonight to see if we can cut back on some of his inflammation. Hopefully that will provide his organs with a much needed break and take some of the pressure off his belly.

Thanks for your continued prayers.

Update...

Things continue to be very quiet and so very boring around here. Gavin is a puffy man this morning and his ANC dropped from 1000 to 600. Not too bad but showing us that things are just not right. Because we are not able to give Gavin is meds through his belly, he has not been able to get his medication that helps with the inflammation that fat in his TPN causes. I heard that duPont is trying again to get the Omegaven that we tried to get last year but were unable. The Omegaven has anti-inflammatory effects, which Gavin really needs.

Gavin's past two cultures have been negative so I am praying that we will be able to get the line tomorrow. In reality that probably will not happen -- but a girl can dream right?

Peek Into Our World...

There really isn't much to post tonight as our day has been very quiet. Gavin slept most of the day, which was much needed. Madison and I took a quick trip home to check the mail and make sure our house was still there -- it was.

Since I don't have much to write I thought I'd give you all a peek into our world over the past week....

Enjoy.

More Bugs...

We learned today that Gavin is growing another bug in his cultures, which the surgeon said may extend our time here. We have to have all the bugs cleared out before we can place the new line. After having the line pulled Gavin has been showing signs of inflammation, with some swelling and his enlarged liver and spleen. Sometimes when an infected line is removed it can kinda flick off some of the bacteria into the blood stream, which most likely is the cause for this.

Today we hooked up Gavin's belly to some suction which seemed to provide him with some relief along with the IV Zofran. I'm really hoping the his gut will wake up a bit once all these bugs are cleared -- only time will tell.

We had a visit from some friends tonight who brought some food from the outside world -- thanks guys. Also my mom spent the afternoon with us and took Madison out of the hospital for some much needed fresh air and new scenery.

Looks like we will have a quiet weekend -- lets hope.

Update...

It's eleven o'clock and Gavin just got back from the OR. The line is out and Dr. Katz was able to place a fem line without any problem. Gavin had a terrible time waking up after the surgery. He must have had increased secretions from the breathing tube which caused horrible retching and lots of drainage out his belly. He is finally settled and I think he is about to fall asleep.

Now we just wait.

I feel like waiting is all we do these days. Any parent of a chronically ill child knows that the worst part of hospital life is the hurry up and wait epidemic.

Still Positive...

Yes -- Gavin's cultures are still positive for all of his unwanted guests, in fact we are now getting fungus out of both lumen which we thought one had previously cleared. We are waiting now to be called down to the OR to have his line removed and a temporary femoral line placed. He will also be getting some platelets as his low.

It has been a very long day. I basically been sitting here on this "bed" or whatever you want to call it, waiting for an OR slot to open. We did get to go on our field trip down to the cardiac lab where we watched Baby Einstein and got to pick toys out of the treasure chest .... oh -- and Gavin got an echo.

Thanks so much to those who sent the flowers to me today -- you have no idea how happy this made me feel.

Time for Blood...

Although still relatively stable Gavin's hemoglobin took a huge drop last night and blood was ordered right away for this morning. He is about to receive it now and I of course am looking forward to seeing my pink baby -- pink is not a color we see very often :) His cultures are still positive and today he has been running a fever. Part of me just want to see the line go and we can start fresh. Even if we start getting negative cultures there is always the chance that bacteria is hidden under the layers of crud with in the line, which will just present themselves at a later date. Of course the main reason for trying to save the line is the ever present access issue, which is a very valid concern.

Today has been a very busy day for us. We spent the morning making a gingerbread house, took a "Christmas Tour" of the hospital and then Madison headed down to Child Life for some much needed play time outside Gavin's room.

I'm tired and it's only eleven o'clock. Oh well -- it's so worth it!

Same Old Thing...

One of these days I wish I could post on this blog something new and amazing but I guess that will just have to wait. Cultures are still positive for all three bugs. The doc is not going to give the ampho locks long to work as Gavin is basically a ticking time bomb.

We had yet another meeting of the minds today -- this time with our main doc and the GI group. The GI team is at a loss of ideas as well. They mentioned trying to get compassionate release from the FDA of a popular motility drug that was taken off the market for cardiac complications. We'll see. They were thinking that at least that drug might help us to get medications into Gavin. I'm not sure if they are actually going to pursue this or not.

Gavin will be headed down stairs at some point in this stay for an echo and ekg just to check and see how his cardiac function is. The heart is yet another organ system that can be effected by his underlying issues, not to mention he has been hanging out with fungus near his heart for over two weeks.

Thanks so much for your prayers -- they make such a difference.

Off to Dupont...

Ok --- so here is the plan.  Madison, Gavin and I are leaving for the hospital within the hour.  Our doc was not able to coordinate the amph locks with the staff so we will offically admitted tomorrow morning and we will all, with Daddy be staying at the RM house tonight.  Today we are going to start blood cultures and do all the labs to get things cooking.

We are going to give the lock until Friday to work.  If they do -- great.  If not we will have the line pulled out and get a temporary femoral line placed and then hopefully get a new central line placed on Monday.  

Gavin has been have some high fevers and all three bugs are still growing do Dr. Raab is thinking the line will have to go.

Please pray for our sanity this week.  It's going to be a very difficult week. 

We're off...