Sunday, June 29, 2008

Better Days...


After a long, emotionally draining past two weeks -- we were discharged from Hotel duPont. Gavin got his new line, however the surgeon only placed a single lumen instead of Gavin's much needed double. I'm over it.

***sigh

We left the hospital last night and headed to the Beach, which we now are enjoying as a family. Time seems so much sweeter right now -- time with each other, enjoying each other. Once again we thank you all for the overwhelming love you show our family. Your words of encouragement mean so much to us and help us through so many difficult times.

I'll be sure to update when we get home later in the week.

Friday, June 27, 2008

Another Day...


We woke up this morning thinking that we were going to get Gavin's line placed and get to go home this evening -- things have changed. We found out that once again Gavin had a positive culture, yesterday's to be exact. So now we are stuck here waiting to see what exact bug grew.

If the surgeons are in house tomorrow doing other procedures they may be able to get us in -- but our luck and not been that good. We'll see. I was pretty upset and emotional this morning but we are feeling a bit better this afternoon -- Well Adam is on cloud nine as he got the papers for our handicap parking pass. It's the little things that get us through.

Thanks for all your prayers and support and thanks for those who have introduced yourself in these past few days.

Thursday, June 26, 2008

Update...

Things are quiet -- but good. The doc's feel fine with placing the line even with the spot on Gavin's ultrasound. He is on adequate antifungals and antibiotics and his urine looks good. We were hoping to get a line placed today, but as of right now it will not be happening -- Gavin's OR slot got bumped until tomorrow.

Nothing will be happening this afternoon and should hopefully get out of here tomorrow evening, if everything goes as planed.

Wednesday, June 25, 2008

Update...


Today we learned that there may be a possible "spot of concern" on Gavin's renal ultrasound. They said it didn't particularly look like yeast but still possible infection. We have to clear this up before the line can be placed. So far all cultures are now negative, which is good news.

We had a pretty quiet day -- still trying to process yesterday's events. We are so thankful for the outpouring of love and support we have had today and last night. I can honestly say that I'm not sure where we would be if we did not have the support, love and prayers from people like you. Even though some of you we have never met, know that God has used you in an incredible way to bless our little family. Thank you also to the other mother's with chronically ill children who have offered your support -- it is always nice to talk to another women "in the midst of it."

We should get out of here soon but the past has taught me never to think we are leaving until we walk through OUR front door -- we once had to turn back about 3 miles from home!

Tuesday, June 24, 2008

The Scoop...


So I'm going to try to explain what the plan is going to be for the next few months. Basically it all comes down to this -- there is nothing more that we can do for Gavin's body, specifically his bowels, which is the source of his infections and the biggest issues that will make him very sick, very fast and from which he may not recover. With that said the only thing that is left to do is have Gavin evaluated to transplant.

We have started the process of sending our boat load of records over to Pittsburgh Children's Hospital to start the process. It doesn't mean Gavin will get a transplant but it also doesn't mean he wouldn't.

With all this said my heart and mind is battling with the question of where do you draw the line? I will not go into that anymore because it is such a personal issue for Adam and I, but know that this is a huge battle for our family. Everything that we do has a pro and a con. It's hard to watch our little boy suffer and it's even harder to make the right choices for him -- something I pray that other families will never have to face.

Update...

Yesterday's blood culture came back positive -- meaning we start all over with the needed 3 negative cultures to replace Gavin's central line. I had a long discussion with the Dr. about my conversation with ID and I'll update on that later -- I need to process it myself first. Please continue to keep Gavin and us all in your prayers as these have been very difficult days.

Monday, June 23, 2008

The Future...


Today we spent the morning downstairs scanning Gavin's body for yeast -- the great news is everything looks just fine. However this evening the Infections Disease team came in a had a rather long visit with us. They basically said there is nothing more we can do, as far as Gavin's infections and the yeast and other bugs he keep growing out in cultures. This was hard news for me to hear. I know that by giving Gavin so many antibiotics and antifungals that we are just messing with the whole "bug kingdom," and it eventually will revolt -- and it has. They talked about needing to sit down with Gavin's main doc and talk about the future... and that's when they left.

So now I have been sitting here sick to my stomach thinking over and over about what exactly, "the future" means. In all fairness the ID team was very understanding and informative -- it was just crappy news to deliver and also bad timing.

Gavin still remains fever free -- which is just so important. I don't know what the plan is for placing a new line but hopefully it will be within the next few days. We will be checking counts again in the morning to see if Gavin needs any blood, and that's about it for tomorrow's excitement -- I hope.

Sunday, June 22, 2008

Facts Of Our Day...


Gavin still had a temp last night but so far is fever free.

Adam and I were able to take Gavin out on the balcony in the sun.

Aunt Jenny came and played with Madison for four hours straight.

Madison and I picked up dinner at Saladworks.

Madison got her fingers stuck in the display case at Saladworks, requiring what seemed like the jaws of life to free her.

We all had the most "crawl-out-of-your-skin-boring" kinda of day.


Thanks for your prayers!

Saturday, June 21, 2008

Update...

For the most part we all had a very quiet day. Madison and I took a day trip to Babies R' Us to purchase Gavin a new car seat as his broke during the night after I dropped it -- lovely. Our little trip ended up being a long trip as I got completely lost and Madison and I spent an hour or so "touring" Deleware. We eventually made our way back and the rest of the day was rather boring.

Gavin is still running fevers, which is very concerning. Technically if the line was the source of infection and the line was removed his fevers should subside -- they have not. Gavin also once again is swelling up like a balloon and is having some pain as well.

I am really praying for a quiet night. Sleep has just not been possible these past few nights.

Friday, June 20, 2008

Why Mommie Doesn't Nap...

Today was a crazy, busy and exausting day. Gavin received a transfusion in the morning, got a PICC (IV type line) placed in the afternoon and then had his infected central line removed. He was running a temp this afternoon but is doing better now, as he was given tylonol. We'll see tonight if the fevers return or not.

On a side note -- people always ask if I am able to nap if the kids are sleeping. The answer is no. I took a small nap today and this is what I woke up to...


video

Game Plan...

As usual this morning came with an early visit from the doc followed by the crazy game plan for the day. Gavin will be getting blood this morning first thing, followed by hopefully a placement of some type of less permanent IV but not a regular IV. After we gain other access we will pull the line.

We also are starting another IV antibiotic and another bug grew from his line in addition to the yeast. After the line is pulled we just have to wait for cultures to come back negative. While waiting I'm sure He will been seem by Opthomology, have an echo and also possibly a renal scan to clear him of the yeast.

We'll see

Thursday, June 19, 2008

Update...

Things are not going well. We started off coming for this admission thinking it was just for blood products and now Gavin is very ill and will be loosing his central line. Gavin had a fever this morning but it was not unusual as it seems that Gavin always has some type of fever these days. By around 2:00 it had spiked to over 104 and an hour later our doc came in and told us Gavin is growing yeast.

For a bit of a science lesson -- If yeast is present in the blood it can be life threatening. Yeast is very sticky and will stick to things like the heart and eyes and is impossible to get out of a central line -- therefore the line must go.

This will be, I think, our 5th line this year -- just not good. I am trying to find some way to comfort my ever confused and overwhelmed mind. When can our family just catch a break? It's hard -- especially on days like this.

I'll be sure to keep you all updated. Thanks.

duPont We Go...



Today Gavin is being admitted to duPont Children's Hospital for low blood counts.  In typical Gavin fashion, he also decided now would be a good time to have a fever.  I'm not sure what the plan is going to be.

I'll update when we know more.

Tuesday, June 17, 2008

Postive Cultures...

Sunday evening we got a phone call that Gavin grew a positive blood culture. Since he is not overly symptomatic we are able to stay at home with a repeat culture and wait for the results. We drew the culture yesterday so we should know within 48 hours.

Gavin had a great birthday -- thanks to all who sent well wishes and gifts!

Saturday, June 14, 2008

My 2nd Birthday...


Hi everyone it's me Gavin -- wow, I can't believe that I've been in business for two years now.  It has been a fun two years and my Mommie and Daddy have worked so hard to get me to where I'm at now.  I just waned to take the time and thank all my fans including my family, my friends -- well, Mommie and Daddy's friends, my church, my friends at duPont Children's Hospital and last but not least all you bloggity friends from across the world!

In honor of my 2nd birthday I've compiled a short list of things I never thought I would accomplish at the young age of two:  

1.  I never thought I would have my own personal fan club from around the world.

2.  I never imagined that I would cost just shy of one million dollars in medical expenses just this past year.

3.  I never thought my fellow friends that were born a year later than me would be much larger than me -- it's ok, watch your back, I'm getting a new set of wheels.

4.  I would learn that picking my GJ stoma is much more enjoyable than my boring nose.

5.  I would learn how to call my mother to my bedside in less than 5 seconds flat my pulling off my cardiac leads or dropping my heart rate -- ya, I know how this game is played!

6.  I never thought I could be loved so deeply by so many people, many who have never met me.

7.  I never thought I would come to know the power of prayer at such a young age.  -- I now He hears you all talking to him because there are may times He talks to me!


Well faithful fans, I guess I'll turn this ship back over to the boss.  Thanks for making it a great year!

Your pal,

Gavin


**Click here for Mommie's birthday message or here for Daddy's birthday message.

Thursday, June 12, 2008

Email Updates...

Email updates are now available. Look to the left side of the blog to sign up!

***That would be the right side... thanks Dan.

Hard Few Days...

These past few days have been throwing us some challenges.  Gavin has been running temps and we drew blood cultures yesterday morning, which are given up to 48 hours to grow.  If anything grows we will most likely have to be admitted.

Yesterday afternoon I got Gavin's Central Line caught in his car seat and it broke.  We made the trip down to DuPont yesterday only to have to go back again today because it was not fixed properly.

Please pray for negative cultures and my sanity -- it's been a really bad week.

Tuesday, June 10, 2008

Playdate at the Pool...

So far Gavin seems to be doing fairly well.  He is having quite a hard time with the heat and his body regulating his temp.  He has a constant fever when out in the sun, which confuses me to no end trying to figure out if he is sick or just unable to cool himself adequately.  

We have been enjoying spending time together as a family and right now we can't even deal with the thought of going back to the "hotel."  Yesterday we had a play date with my friend Dawn and her little girl Ava.  I got up the courage to put Gavin in a chair inside the baby pool.  He really shouldn't get his lines wet -- but every child should be given the chance to play in water!  Gavin didn't really enjoy -- but Mommie did and it helped keep his temp down!

Enjoy the photos...


 

Tuesday, June 3, 2008

A Little More Q & A....

Did you go to school for photography?

Thanks, but no. I use a small average to below average digital camera. I just take a million shots and only share the best. I never use flash and edit my photos with either our Mac or Picnic.com.

What is Gavin's prognosis and what can you expect the future to hold for him?

According to medical science Gavin has a degenerative disease and our mission right now is to try to slow the progression of the disease. There is no cure. With that said Adam and I believe anything can happen -- and at this point we are all in favor of a miracle. We believe that all of our days our numbered and when it's Gavin's time to go, he will go be with Jesus -- at the age of 3 or 83. When God wants him Home Gavin will go Home.

How do you handle Madi's questions and fears about her brother?

This is a very interesting question that made me really think. Truth is, Madison has only ever had a sick brother and in her small mind she often thinks of other children like Gavin as "the normal." When we say, "Madi, Gavin has a fever and has to go to DuPont," the first thing she does is smile and ask, "is Child Life open?" Over the next year or so I know things will be changing in her world and life may get confusing for her, but right now we do our best to keep life normal for her even if it's while living at the hospital.


There are a few more questions that I'll answer another time. For right now we are home and happy. Thanks for your support this past week.

Monday, June 2, 2008

Update...

The most exciting news of the day came shortly after 1:00m when Gavin snapped his central line. Madison and I left the room to get a drink and came back to Gavin in a pool of blood. Thankfully we were able to repair the line, after frantically trying to find IV access to run his sugar through.

**sigh

For now  -- knock on wood -- Gavin seems to be responding to the new regimen of Neproxin during his lipid infusion. We will not know for sure if this will help his fevers until he is off antibiotics, and he will be forced to fight his bowel bugs on his own. We will be going home on a 14 day course of IV antibiotics -- that just might give us 14 days at home!

Sunday, June 1, 2008

Update...


Today was another long quiet day. We found out this morning that Gavin grew out two seperate bugs from his line. He has been in some pain through the night and today so his sleep has not been very good, which mean no one slept good. His hemoglobin took another drop but he was able to bring his platlets up a little bit.

We are expecting to go home in the next day or so.

A Little Q & A...

Why does Gavin drop his blood counts?

As part of his metabolic issues Gavin's bone marrow does not produce the same amount of red blood cells that you and I make, which if the first reason. Secondly, when ever Gavin gets any type of illness, cold or infection, his body goes into a massive inflammatory state called MAS. As part of the MAS both his liver and spleen swell to fill most of his abdomen and trap a lot of his red blood cells as well as his platelets, requiring multiple transfusions. Also, as a part of the MAS his white blood cells "swallow" his red blood cells. for more info on MAS see the link to your right. The last reason is that we tend to take a lot of blood for labs and because Gavin does not reproduce the blood adequately his counts drop.

Why does Gavin get so many fevers?

As part of his mitochondrial issues his bowels have greatly deteriorated making the bowel wall very thin. Because the bowel wall is very thin bacteria that we all have in our stool passes into Gavin's blood stream causing massive infections. These infection are all life threatening, though Adam and I speak of them like they are a common cold. His lipid also triggers the MAS, which mimics a blood infection and causes very high fevers. We never know if he is going septic (blood infection) of his fevers are due to inflammation, which makes our life a tad bit complicated.

Is there anything we can do to help obtain the Omegaven?

I would love to say yes but the answer is no. At this point we feel we can get the FDA to allow it's use for Gavin under it's "compassionate release", but the roadblock now is funding. It's something the hospital must fund, due to liability issues. We can't just come up with the money and they provide the drug. Omegaven is not FDA approved and comes with a whole slew of liability issues. You are always welcome to protest outside the doors of duPont yelling things like "free Gavin" or "show us the money" but I doubt this would be effective.

Is there anything we can do besides pray?

A nice Starbucks skinny vanilla latte would be nice -- joking, I promise. The thing that Adam and I treasure most of all right now is friendship. So many times people feel like they will be an inconvenience to us or get in the way, which couldn't be farther from the truth. Even though we know we have a huge support network it is hard at times to not feel like we are isolated from the real world. We find that practical things like a meal, an email or a message left on my phone make our day. Even though you all may not see the effects of your prayers -- we do. Gavin is still with us and Adam and I are still married -- that says a lot.


You all are amazing -- feel free to ask questions anytime and I will make sure I answer them in my posts.