Events...

Yesterday Gavin was admitted to the PICU because we lost his femoral line and once again his poor vein access reared it's ugly head. They were able to rewire a new line and also place a tempera iv in his jugular, which has since clotted off.

Overall Gavin is doing pretty well and he should be getting his new line in a day or so. He still has some strength to regain as he is still unable to get himself into a sitting position, which isn't helped by his very large belly.

Today has been a very boring day with the highlight being Madison vomiting all over my lunch after stealing a red beet off my salad and thus inducing the flow of vomit. We did get Gavin into his chair today and took him for a walk, which he enjoyed!

Hopefully tomorrow I will be updating from the OR waiting room!

More Bugs...

Last night was a very long night. We fund out that the new femoral line is now positive for bacteria -- yuck! I'm not sure what this means as far as placing a new line. Gavin's femoral line began leaking at the site and it was found that the one port in cracked somewhere up inside his body -- so we are down to one lumen, which is difficult considering the amount of meds and fluid he is on. This morning we are noticing that the dressing is wet again -- maybe the other port now. I hope not. Neither are drawing blood at this point. I am hoping we get a new line today, but I really doubt they will place a new central line, we'll see.

Madison left her "blankie" here at the hospital last night so needless to say she was up all night with Adam and now at 6:30am she is still awake and running all over the room -- lovely.

Another day, here we come...

On Swallowing Basketballs...

Gavin is starting to turn the corner! I can't begin to explain how scary they first few days are with an infection while we wait and see what his body is going to do and if he will respond -- or not. Once again our bionic boy seems to be pulling through once again.

Nothing really new to report besides the seemingly large basketball he seemed to have swallowed overnight, (his liver and spleen.) We are going to give him a round of lasix to try to pull some fluid off his body as he is having some minor difficulty moving air due to the size of his abdomen. His fevers are become less severe and spread longer apart, which is making for a happier Gavin.

I haven't heard his counts yet but I'm assuming he may need another round of blood and possibly platelets -- we'll see.

Thanks as always for thinking of us!

Long Night...

Gavin did well with the removal of his line and they were able to place a temporary femoral line with little problem. Gavin has had a very rough night so far and is in need of some extra prayers. He is still having high fevers and his blood counts took a very large hit, which I think is causing his a lot of discomfort. For those who know the "numbers" his Hemoglobin went from 8.9 to 5.8, Platelets 109 to 44 and his White Count is 1. We are getting ready to hang some blood and I have requested some addition morphine to try to keep him comfortable.

In response to some of the comments I've been getting on this blog. I again want to state, as I have in the past on my personal blog, that this is a therapy for me -- a way to get it all out. You as readers in no way can understand my heart or intentions. Even if some think they may understand our situation and feel we can use your advice, unless you are standing beside Adam and I fighting for Gavin's life, you will never know what our life is like.

Adam and I absolutely treasure the positive support we receive here. Thank you for being apart of our lives.

Fungus...

After only 9 hours cooking in the lab, Gavin's cultures are growing yeast. Normally, fungus takes a long time, sometimes up to 48 hours, to grow out, meaning a growth after 9 hours means a strong infection. The plan is to pull the line and replace it with a new line at the same time. This is a huge risk for reinfection of the new line but Gavin cannot be managed without central access.

Our little boy is looking so sick -- please pray he can just fall asleep and stay deep in his dreams until he is feeling better. We didn't get up to out room until 5am so we are both just so incredibly tired.

Thanks for you prayers!

Back to DuPont...

Gavin and I will be headed out in little bit to head down to duPont.  Gavin has been running a temp all day and it has finally top off at 105 -- it's time to suck it up and end our stretch at home.  It really stinks but we had such a wonderful 12 days at home!

Please pray we can figure things out quickly and that Gavin will be feeling better very soon!

10 Days...

I can't even begin to express how good it feels to have been at home, together as a family for 10 days!  Do you hear me -- Ten Days.  We have had such a wonderful time this past week.  I made up for lost time with the kids and crammed in just about every activity on my to-do list.  We had a blast!

Gavin is doing ok but of course he has been running fevers all week!  If he has some type of infection the fever's should just keep getting worse, but they aren't.  So we are crossing our fingers and hoping that the fevers are from his autonomic dysfunction and not infection.  Time will tell.   I have a goal over the next few weeks to get Gavin's J-tube drainage bag clamped.  By having it draining all the time it just promotes his already bad motility.  The only negative is that this could put him at greater risk for translocation -- but we really don't know that for sure.  Before we start that process we are trying to get rid of some of the bacterial overgrowth in his small bowel.  Not that you really need to know, but his J-tube drainage smells like rotten eggs -- so gross.  We'll see how things go.

Thanks to all who participated in the blood drive for Gavin this past weekend.  I'll try to get some of those photos up soon.

Keep praying for yet another week at home!  

Home Again...

After much confusion over deciding to send us up to the floor or sending us home -- home was the winner.  Words cannot express how happy we all are to be at home, sleeping in our own beds.

We will have to keep a close eye on Gavin and his lab's for he next few weeks to make sure he keeps his levels up.  Thankfully even if he drops his Calcium a little he shouldn't go low enough to give him the scary reaction seen last weekend.

Thanks for your prayers -- keep hoping for negative cultures for the fungus.

Update...

Oh, how I wish I had something great to tell everyone but I really have nothing to say. We are still down in the ICU in a holding pattern. There is talk of going up to the floor but I really haven't heard anything certain. Gavin's Ca levels are now at low normal. Yippie!

Thanks so much for thinking and praying for our family!

Better Day...

Gavin has stabilized out over night and although his ionized calcium in still 0.8 with low normal being 1, he is looking almost totally back to his happy self. It is basically going to be a game trying to balance out his levels again. By giving Gavin calcium is has caused his potassium to drop to extremely low levels and by giving him more potassium we will have to watch other things like his Mag and Phos. It just a big balancing act. I though you may all enjoy some lighter points to our past 24 hours:

As we loaded Gavin, seemingly in a critical state and barely coherent, into the back of the ambulance and drove away Gavin managed to tell us how "cool" it was and pointed out the back window.

I was asked to call Adam from the back of the ambulance because he was running through red lights and driving like James Bond, chasing the seeding ambulance to duPont.

After Dr. R examined Gavin and said bye, Gavin gave him a nice wave with his "claw".

Hey -- you just have to find the lighter side to the big mess, right?

In The PICU...

Pure and Simple -- Gavin scared the crap out of me this morning! When I arrived home from a baby shower I found Gavin incoherent, had both his fists clenched, was unable to hold his head up and was choking on his saliva -- very scary. After speaking with his duPont attending we made the decision to bring him to the local hospital first to have him stabilized before transferring him down to duPont.

We found that the cause for his sever symptoms was hypocalcemia or low blood calcium, which relsuted in tetany. Gavin's Ca was 4.1 to be exact, which is very low. We were transported via ambulance, with flashing lights and sirens down to duPont where they are trying to correct the imbalance. He will need to be closely monitored in the ICU until his Ca levels stabilize.

It was a long day for Adam and I. Our local hospital was just completely inadequate and very unhelpful. I am tired and Adam has to drive all the way back to PA tonight as he can not stay here in the PICU.

Here's to another exciting day in the life of the Owens' family!

Back to the Hospital...

This morning Gavin was having some very weird symptoms this morning and he was scaring us so Karen took him to Pottstown ER and they wouldn't do anything but transfer him down to DuPont.  We aren't really sure what is going on but he was very unstable in his balance, trouble breathing and keeping his breath and his hands are clenched in a fist.  When you try to open his hands he screams like he is pain.  

I will post more once we get more details.  Thanks again for your prayers.

Update...

Gavin's last Ampho lock will be pulled out of his line today -- and we are going home. We are just going to have to watch the cultures and if we have another positive for yeast we will be readmitted and the line will be pulled. We are all so very glad to go home -- I cant even begin to explain how much I want to walk through my door.

Thanks as always for your prayers and support.

A Bump In The Road...

I got word this morning that Gavin has a positive culture for more fungus! Needless to say our frustrations are high. At the same time as being frustrated I am also feeling relieved, as this is the answer as to why Gavin continues to swell up and his belly to be getting larger. I'm not sure what the plan is at this point.

I'll try to give an update this evening.

Update...

Most exciting news of the day consists of our nurse almost burning her weave on Gavin's radiant warmer -- we all laughed about it. Gavin's liver and spleen continue to be grossly enlarged. He started having trouble sitting up today and just seems so be very uncomfortable. He did run a temp for a bit today so we will just keep a close eye on the cultures.

I had a visit from my friend Dawn today, which just made the day so much more tolerable -- thanks Dawn!

Let's hope for another no news is good news day tomorrow.

Update...

Nothing new to report -- nothing at all! We spent the morning walking around the hospital making sure to stop by the fish downstairs and the play room on the 2nd floor, I know exciting stuff to report. Gavin's belly continues to be a cause for concern. His liver and Spleen swell in response to either infection or inflammation both of which we think are under control so I am concerned that it still seems to be getting larger. Who knows.

Cultures are still negative but once again that really means nothing considering both of his lumen's are packed with Amphoteracin. The Ampho locks can be heard being talked about at any given time on the unit as no one really seems to understand the process of switching from one lumen to the other and what is compatible with what. To make matters worse I had the nerve to ask for the Ampho infusion to be bummed up an hour do we can take Gavin downstairs to eat dinner with us -- talk about stirring up mass chaos.

I had a brawl with the doc this morning -- nothing new there. He is a great doc but unfortunately he is the man who brings me all the bad news, therefore receiving the brunt of my emotions.

Thanks for all the encouraging comments, especially on my blog. I am constantly amazed how well know our family is across the country and just how many people are praying for Gavin.

Totally amazing!

Day Two Update...

It has been a very quiet day. Gavin is acting more like himself and his labs are looking better everyday. His bilirubin has come down so he is no longer looking yellow, though his liver and spleen are still very large, which is causing him some pain.

We were able to draw blood back on the one lumen of his central line that was giving us problems yesterday so that made things go nice and smooth today and once again we are still getting negative cultures. We really will not know for sure if the fungus is cleared until the seven day course of Ampho locks is complete.

Someone, not knowing my fragile state today, ordered Gavin to get OT and PT on a daily basis. This did not go over well with me as I just want some space. I know Gavin needs help with his development, but the poor little guy looks like he just consumed 15 pizzas and a case of soda -- If I were him, a workout would not be my idea of a good time. I asked them to leave -- nicely of course.

Today was a very rough day for me -- mentally more that physically. Sometimes our reality flashes before my eyes and is pretty much slaps me in the face and reminded me that this is not the life I ever imagined for my child, my family or myself. With that said today as we walked past the intensive care unit I was humbly reminded that things could be worse. There has to be a way to enjoy life even if it mean being confined within these walls -- I just need to find it.

Thanks for keeping Gavin in your prayers!

Blood Drive...

Today I received an email from my little cousin saying that she was sponsoring a blood drive in honor of Gavin and to receive her bronze award for her Girl Scout Troop. How amazing is that -- such a young girl with a huge heart! Please help support her blood drive and help give the gift of life to all who need it. Here is an excerpt from her email:

"I am having an American Red Cross Blood Drive in honor of my cousin Gavin who is medically fragile. I am also working on my Bronze Award for my girl scoot troop. Did you know every donation can save up to three lives? Well it can and if you sign up to donate you will help us make a difference. So please sign up and help Gavin and every one else who needs it.Real people just like you save real lives every day just by donating blood. You can join them. Make an appointment to donate. Please give blood!"

The blood drive will be held September 20th from 8am to 2pm at MARC Children's Services located at 3075 Ridge Pike, Eagleville, Pa. You can check avalible times and sign up here.

Until Next Time...

Update...

We have begun the Amphoteracin locks in Gavin's central line and now we just have to wait to see if it will work. Each luman gets locked with Ampho for 8 hours per day and then Gavin receives the normal Amphoteracin infusion over 2 hours. The locks will need to be administered for 7 days and then we will see if cultures grow after those 7 days. In the mean time cultures will be drawn daily to see the progress.

Gavin grew out another gram positive bug as well so we will continue treating that as well. In typical Gavin fashion we are already encountering our first glitch as his one luman will not drawn back blood, meaning we can not get a culture or draw back the Ampho lock. We will see what happens with that -- I'm not sure.

Everything that I previously stated about wanting to be here no longer applies. After 24 hours I have been reminded why I hate living in this place. Gosh, I need some major strength right now -- I just really do not want to spend another week away from home.

Woops....

It just came to my attention that I posted an update on Gavin on my blog and not here -- sorry about that. Gavin has been very sick are entire vacation. He started with a very high temp our first day at the beach and is still febrile as we speak. We came down to DuPont two days ago for blood as all his count were very low. His was looking sick all around with a few new symptoms including some jaundice and also his ANC or his ability to fight infection was only 300, which is pretty poor. We did a few cultures while at the beach and nothing grew -- until last night. I got a call early this morning from the Doctor saying that Gavin's culture is growing yeast. No fun!

The plan right now is to bombard Gavin with three different antibiotics as well as begin the Amphoteracin, which is the med that sent him into kidney failure a few weeks ago. We are also going to attempt to save his central line by using the Ampho locks. This has only been done six times -- ever -- and four patients saw good results.

Although I'm very tired, I am so glad to be here. Gavin has been so sick and my anxiety levels were through the roof with having him at home with us. Thanks in advance for your prayers!