Friday, June 26, 2009

Enjoying Home...

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We have had a busy fun filled packed week! We are home and making sure we all enjoy every last second of it! Wednesday we left the suitcases packed and headed out. Madison had her first dance class and made her mommie so darn proud. If you know Madi you would know that when you watch her she doesn't seem like the ballerina type -- but have her put on her pink tutu and she will float across the room! I was so impressed with her moves she practically brought a tear to my eye. It did my mommie heart good to see my little girl have her moment to shine -- by her self with her mommie watching and cheering her on!

Today was our first Pee Wee sports class at the YMCA -- totally cool! Gavin did so well, as this was his first experience with children his age. The class focused on basketball today and Gavin was totally thrilled with bouncing the ball -- kinda, sorta with mostly mommie bouncing... but Gavin certainly tried! I think his favorite part of class was running laps on the red line around the court -- I think he was mostly laughing at mommie running amongst the preschool crowd! Madison also seemed to enjoy class and did very well with "mommie in the class".

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Gavin is hanging is there. We got a call today from duPont saying Gavin's cultures from this new line are positive. What the heck -- this poor kid. The cultures took a long time to grow so hopefully the antibiotics he is on in combination with the IVIG -- will give Gavin the boost he needs to fight this bug. He's acting ok but is still running fevers off and on. We are hoping to get his central line in next week as we leave for the beach on Friday -- the PICC line will be a nightmare on the beach!

These photos were from this past weekend at duPont. Adam is such an amazing daddy, and does so much for our little family -- There's nothing like a little Daddy time!

Tuesday, June 23, 2009

No Central line...

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Gavin continues to have a consistent fever so they had to cancel the central line placement. All cultures are negative so we are thinking this is either viral with no symptoms or inflammation, which Gavin tends to struggle with. Gavin's Immunoglobulins are very low so He will be receiving a large dose of IVIG and then we are going home.

Did you catch that? We are going home! Please say some serious prayers that this PICC line holds up. For most people if they loose the PICC it's not that big of a deal but it is literally Gavin's life line. He cannot maintain his blood glucose levels without a continuous infusion of high dextrose. I think he will do fine as we have him in little arm restraints to prevent pulling.

I am so stinkin' happy to be going home.

So Happy.

Monday, June 22, 2009

Totally Cracking Up...

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Today has been a very quiet day. There has been some talk on holding off on placing the new central line due to Gavin's continued fevers -- I hoping it's just talk. Madison became sick last night with fever, so I'm thinking both kids are dealing with a little virus -- and a virus in Gavin's world is beautiful and much preferred over bacterial infection. Madison is with my parents and will stay there for the duration of our stay here at the hospital, which hopefully will only be a few days.

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In the past 24 hour I have watched 6 full length movies from the Redbox -- thank you Lord for the Redbox. Amongst my favorites, which might I add were totally poor choices considering my life circumstances, were
Curious Case of Benjamin Button and The Boy in the Striped Pajamas. Other good ones included Mall Cop and Yes Man. Just in Case you were wondering.

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These photos speak so much to me. Gavin is truly so inspiring to this Mommy.

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Sunday, June 21, 2009

Nothing New...

I have have absolutely nothing to report -- hence the lack of updates. We have spent the weekend trying to keep the kids occupied. We had a nice little father's day here at the hospital and even took daddy out to breakfast at a nice little place called AI duPont Hospital for Children's Cafe.

The plan is for another quiet day tomorrow and then a possible central line placement on Tuesday. Please pray Gavin stays stable and nothing hinders this line being placed. Gavin was running a fever all day yesterday and his pretty puffy so we are all sitting on the edge of our seats. So far all cultures from the PICC line have been negative.

Yippie!


Friday, June 19, 2009

Another Day...

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It's been a rather quiet day around here today. This morning both kids were ready to go at around 6:45, so we all went down to the cafe for breakfast. Madison is getting very good at placing her usually order of "one small pancake please," and Gavin is getting really good at balancing our tray on his lap using his arm rests and skinny little legs.

Gavin's PICC line has been a bit worrisome with some significant swelling in his hand but I've been told this can happen due to the larger than normal catheter that was used to get a close to central access, without actually going central. Anyway -- it's fine but still has me a bit on edge. Today has been a rough day emotionally for me -- I'm not sure why. I sat in the play room today and watched all the kids come in -- some in an obvious battle with cancer, some missing limbs and then also watching my children. This is a sad place to live in. Knowing that so many little kids daily fight for their lives. I really wish there was a way I could spare my children from this suffering -- but sadly it is are reality. Thanks so much for all the prayers for Madison. She is actually doing better and seems to have found her grove here at duPont. She spent a few hours this morning at the front nursing station "answering phones."

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I was looking through some photos and found these pool pics, which I think were from last week. My little babies look so happy. Oh how I long to be sitting by that pool. Do you just love Gavin's water wheelchair we rigged up for him. He loves it!

This weekend Adam will be taking over night duty at the hospital and Madison and I will be having some much needed girl time and sleep time at the Ronald McDonald house.

Ahhhh.

Sleep.

Thursday, June 18, 2009

We Have a PICC...

Yeah! They were able to place the PICC line with minimal issues. There was some issue with getting the femoral line out when it needed to come out and because of this we all need to say an extra prayer that this new line does not get infected. Gavin is still pretty out of it and most likely will be at least until the morning.

It's been another rough day around here. We really are all just so tired. Thinking of spending the weekend here is almost overwhelming at his point. We are just trying to take one day at a time but it's pretty darn difficult.

Thanks so much for supporting us through yet another difficult time.

Wednesday, June 17, 2009

Still Positive...

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Cultures from this new femoral line have been positive for the past two days, growing out the same two bugs that Gavin initially was growing when he came in on Saturday. This plan is to attempt to place a PICC line tomorrow in the OR. Last year a PICC was attempted but was a failed attempt and it was thought that Gavin had no access for a PICC. W are hoping that with growth something might have opened up -- we'll see.

After a new line is placed the femoral line will be pulled and we will have to stay until net week to get a new central line placed in his chest. Right now his bowel -- the stub that he has left is very sick and leaky, so we want to make sure this new central line will stay infection free before we leave.

I'm tired. Today I just wanted to blink and *poof* it all went away -- no such luck.

Birthday Photos...

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Tuesday, June 16, 2009

Boring Day Gone Bad...

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Oh what a day we have had here at duPont Children's Hospital. It's been a rough one. Actually it started out last night around eight when the nurse came in and said that the resident flagged her down and told her that Gavin was very sick and needed frequent vitals. She said that his cultures from the 16th are now growing out bacteria. I never heard from that resident until a little after midnight. That means I had a knot in my stomach for 4 hour waiting to see what was going on.

I felt better a little better this morning, as Gavin is still clinically looking good, until I later found out tat he is growing two bugs in his femoral line -- the same bugs that were in his central line before it was pulled. We switched up some of his antibiotics to ensure that he has better coverage, but the plain truth is that this is very scary.

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We all feel that Gavin bowel removal was a huge success. In the past four and a half months Gavin has had 3 infections, 4 if you count this new fem line. That is a huge improvement from earlier this year where Gavin was dealing with at least two infections per month. The other huge improvement is that Gavin has been fungus free ever since February -- that's very cool. With all that said it still stinks. We were all hoping for more -- even though we all know the reality. So now we are all thinking about the "what's next" question. I'm not sure we know yet -- though I know that everyone is working hard to find options.

Anyway -- what made the day really bad is that little Madison really struggled with our day. She listens to the conversations going on in the room and then is forced to deal with the scary things she hears. I'm learning that it's probably time to start leaving the room -- which is difficult. I was just on edge today as I was so tired and just couldn't find the energy to entertain both kids, which made for a day filled with Mommie vs. Madi battles.

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We did end the afternoon with some alone time out side sharing a brownie and taking is some fresh air -- trying to find peace. This little girl is amazing. I pray everyday that Adam and I would have wisdom on how to help her cope and find her own sense of self during these long hospital stays.

She is one tough cookie.

Monday, June 15, 2009

Update...

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Gavin had a wonderful day yesterday and we enjoyed the company of lots of friends and family for a perfect party here at duPont. Today Gavin is doing very well -- in fact I actually think this is the best I have seen him in a few weeks. His blood counts are all stabilizing and his cultures have been negative. Now we just need to wait a few days to ensure cultures will stay negative before the femoral line is pulled and a new central line is placed.

Today was so boring -- we must have done about 50 laps around this hospital. Thank goodness yesterday brought lots of new cars and toys to play with so that consumed some of our time. Hopefully tomorrow will be just as quiet. Even though the boredom is brutal, we will take this over any crisis!

Life is good.

Sunday, June 14, 2009

Happy 3rd Birthday...

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I have been thinking for a few days on what to write for your 3rd birthday. I'm not sure why, but even though my mind and heart are filled with so many thoughts and emotions, the words are very hard to find. After being up most of the night thinking and thinking about the journey these past years have been I finally figured it out. It's hard for me to put my thoughts in words simply because there really are few words to describe what you mean to mommie and daddy.


I honestly do not know how I could ever live my life without seeing your pure sweet face every morning. Even though I know that many of your days are filled with hardship I long for those days to never stop. You just keep going despite each and every obstacle put in your path. You are simply amazing.


Last year I asked you if you realized that you have changed the hearts of so many people who are watching your life along side us. It's hard to understand and comprehend the impact you have had on this hospital -- your family and friends -- this world. There is just something about your spirit that reaches out and makes an empty heart full -- can fill even the darkest of places with peace, joy and beauty.


I often question why on Earth God would have chosen me to be your mommie -- I no longer question but fervently ask God to let it never stop. I love you so much my little boy. I pray that in this next year you experience everything life has to offer, no matter what your limitations.


Mommie and Daddy love you.



Happy 3rd Birthday Gavin
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Saturday, June 13, 2009

Admitted...

Gavin was admitted this morning for sepsis. He went straight to the OR from the ER to have that yucky infected line removed. He woke up this morning and gave Adam and I both a shock as his eyes were almost swollen shut and his lips looked like he snuck out and attended a botox party.

Tonight we got settled into our home -- room 15.

Madison and I went out and raided the party store attempting to give Gavin a special day tomorrow. We put up all the balloon and streamers and it looks perfect! Tonight Gavin will be getting Albumin, lasix followed by a blood transfusion. He is still running a fever but seems to be feeling better.

I can't believe my baby is turning three tomorrow.

Wednesday, June 10, 2009

For Your Viewing Pleasure...

If you stick around she really lets loose at around the two minute mark.

Madison's Moves... from Adam & Karen Owens on Vimeo.



If you are reading this in an email click here to see video.

Still Home...

We are all still here in our happy home -- but cultures are still positive for the gram negative rods.  Last night we switched Gavin's antibiotics from Zoysn to Gentamycin and Cipro.  The Zoysn is obviously working to keep Gavin relatively well, as he is not overly symptomatic, but it's just not enough to get rid of the bug that has made residence in his central line.  He is very pale this morning and his little eyes are beginning to swell shut again -- one of the many ways Gavin responds to infection.

Today we all plan to go to the pool and relax.  Maybe we will all just close our eyes and pretend this past week never happened -- just kidding.

Four more days 'till the big T-H-R-E-E!

Monday, June 8, 2009

Good News -- Bad News...

The good news is that at some point tonight we will get to pack up and get the heck out of here! The bad news is that yesterday's cultures both grew out gram negative rods. Because he doing better clinically and the antibiotic seems to be keeping things at bay we will go home and do daily blood cultures and see what happens. If he becomes symptomatic or the cultures stay positive we will have to return and have the line pulled.

Did I ever say how much I love Gavin's Doctor?

Gavin is getting one last blood transfusion right now. Platelets are still very low but seem to be holding steady and white count is down to 1.7 -- but he looks great! So home we go.

Thanks so much for your love and support. We are just so lucky to have the huge support network we have.

Sunday, June 7, 2009

Getting Better and Lots of Photos...

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Ahhh -- I love when it's time to write this post. Gavin has turned the corner and is now on the getting better side of things. He was running a temp for most of the morning but has been fever free this afternoon. The multiple albumin and lasix infusions yesterday really helped to pull lots of extra fluid off his body and relieve some of the pain he feels from pressure in his abdomen.


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Today was a very long day, as every weekend is. It's so crazy how the hospital just seems to shut down -- it's way to quiet for my liking. We got Gavin in his wheelchair for most of the day and took our one billionth tour of hotel duPont. We also switched rooms today back to good ol' room 15, which sadly to say I have raised both my children in. It's really actually crazy to think about -- We've had many holidays in this room, we have talked about death in this room and this is also the room where a glimmer of hope was given and the idea of Gavin's big surgery was first talked about. This is the room Madison hit her head on the door and required 6 staples in her noggin. This is the room we have also met many other families who we still are in touch with now. It's just so crazy to think that we have literally lived our lives in this room and what's even crazier is that I have lots of good memories here -- it's not always that bad.


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They ID'd Gavin bug this morning and for all those who really want to know, it was Enterobacter -- lovely. We switched up antibiotic coverage to cover Gavin better and should be able to go home on only one IV antibiotic. Home was talked about in the next day or so -- but I'm not even getting my hopes up just yet. Last but not least for those who were wondering, Gavin has a Hickman Catheter (central line) in his chest where all blood is drawn from. The only time we have to stick him is when we check his sugar, which he doesn't mind much. Also even when Gavin's central line needs to be pulled we no longer give him an peripheral IV, he always has to have central access, so a femoral line is placed, as long as he still has those vessels open.



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Saturday, June 6, 2009

Tired...

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It's has been a difficult past 24 hours, but we are all getting through and things are getting a little better. Yesterday was a frusterating day, which ended with even more frusteration and emotion. By 8:00 last night Gavin was is severe pain due to bladder spasms and his growing spleen. He was in so much pain that we had some fear that his bladder might have been perforated during a cath, which was later ruled out (thank you God). The spasms continued all night and is was very difficult to get urine from him even with the cathing, which led to even more pain.

Thanks to a few doses of Valium Gavin was finally able to fall asleep around 4 or so. We did a CBC last night which showed that his counts had improved with the blood but by morning they had dropped again. Today he has received an infusion of Albumin and may receive more blood and Albumin tonight after more labs. His platelets are also almost down to 2o,000 which is the transfusion level but as long as he has no active bleeding we are going to try to hold off because they will most likely all get trapped in his spleen and cause even more pain.

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Cultures are still positive and we are waiting to hear the identification of the bugs. Please pray for a peaceful night. We are all very tired today.

Friday, June 5, 2009

Update...

It has been a rough day and I'm sure it doesn't help that I'm running on no sleep. Gavin slept most of the day and I spent all day waiting to hear what in the world the game plan was. Gavin's main doc was out today so we had to adapt to another doc, who is perfectly capable but it different. In all the chaos and uncertainties we deal with there is one thing that I have issues with being different -- Gavin's care. To make a long overly-emotional story short -- we figured it all out.

Gavin's hemoglobin is at an all time low and he will be getting blood very soon. His blood cultures from both lines grew out within a few hours for Gram Negative Rods -- the bad guys. He continues to spike fevers and the swelling has begun. I took lots of cute photos today but sadly forgot my USB cable -- how can I forget the USB cable?!

I had an amazing conversation with Gavin's surgeon this afternoon -- who basically reminded me to never have regrets and to trust that because we love Gavin with all our heart every decisions we make will be the right one for our family. We even shared a laugh over the possible phneumothorax a few weeks back. Strange huh? That's our life.

And might I add that my little boy will be turning three next week?


Crazy.


A true miracle.


Very cool.

Thursday, June 4, 2009

Admitted...

Gavin was admitted tonight to Dupont for sepsis. It's so crazy how fast things can change. We were all sitting on the couch watching TV when Gavin started to shake and turn blue. As soon as the shaking starts we know that within the hour his temp will be through the roof -- and it was. 105. I got him to the ER and he was looking really bad. His blood sugar was near 700, he was floppy and the palest I have ever seen him. Thankfully he is doing better now and we were even able to bypass the ICU. His labs are looking off, especially with his lactic acid at 10.7 and his blood pressures are low. Cultures were drawn, antibiotics were given, boluses are being infused and now we wait.


This really stinks. It's 3am and too late for me to sleep. Rounds start in 3 hours.


***sigh.

Wednesday, June 3, 2009

Pool Time...

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I can guarantee you will be seeing lots more photos like this over the next couple of months! This past week has been so beautiful -- warm enough to enjoy the pool but not too hot for our little over heater of a son. We decided yesterday to cancel the uryodynamic studies that Gavin was scheduled for today. Why? Basically, the outcome of the testing would not change Gavin's plan of care. We know there is nothing physically wrong with his bladder, it's just that it does not have normal contractions to empty, which is often seen in children with Mitochondrial Disease. You either pee or you don't -- it's really that simple. The test was really just to get baseline info and the risks with sedation are too high right now for Gavin. Maybe in a few months -- we'll see.

Gavin and our family were local celebrities today and can been seen here and here.

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Hope you all had a wonderful Wednesday!

Tuesday, June 2, 2009

A Little Update...

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Last week was pretty quiet -- just the way we like it.  On Friday I spent the day with the kids at DuPont as Gavin was in some serious need of blood.  His blood counts were at scary levels -- no wonder he was so floppy and irritable.  He seems to be doing better but he may need more blood this week to get him to an acceptable level.

Tomorrow we will head back down to the hospital for some bladder/kidney studies.  For those of you who do not know, Gavin is unable to pee on his own and requires frequent caths to empty his bladder.  I think the studies are trying to see what exactly is going on -- is this just progression of his disease or did something happen during Gavin's big surgery in February.  Everyone seems to feel that the likely hood of something happening due to the surgery is so small, and even if there is nerve damage there is no way to really tell. We'll see what the show.

Other that medical stuff, not much else is going on.  We have been spending out days at the YMCA, where both the kids will start classes next week.  Madison will be doing dance, and a cardio class and both the kids are enrolled in pee wee sports.  We'll see how Gavin does -- or rather we will see how I will do running up and down the court pushing his chair -- He's going to love it -- even if he never gets to touch the ball.  

I can't wait!