Where Has That Smile Gone...

Oh goodness -- Things here in the Owens' house are a bit stressful right now. Gavin is just a mess. I don't know what is going on in his little body and mind but it seriously is breaking my heart. He is so unhappy. If he is not sleeping he is screaming. It is to the point where we have to restrain both his arms and legs in order to keep him safe. I'm sure some of it is his low blood counts -- He probably feels horrible, but it just seems like something more is going on.

We have decided to have night nursing back and our poor sweet nurse has been left to deal with screaming all night long. I seriously do not know what to do. What else could be causing this extreme irritation? We did labs this morning so hopefully they will give a clue as to what is going on in his little body.

On a more positive note, we got word today that the local Ambucs is donating a special bicycle to Gavin and it is all put together and ready to go. Hopefully in the the next week or so Gavin will be sporting a new set of wheels. These bikes are pretty amazing. The bike is meant to be therapeutic and it will allow Gavin to get the motion of riding a bike without actually having to put the energy into pushing petals or steering. Can't wait to get him on that bike -- I'm sure we will have lots of photos to share!

Please keep Gavin in your prayers -- pray that we can figure out how to best handle him and all his complexities.

Mitochondrial Disease Awareness...

We are excited to begin a little fundraiser to benefit the United Mitochondrial Disease Foundation and help to support their efforts to find new therapies and eventually a cure for Mito. The photos above are a few items that we are selling in our online store. For every item we sell one dollar will be donated to the UMDF. We are excited to do our part in keeping hope that one day this horrible disease will be treatable and children will not have to endure the suffering.

In a totally unrelated note -- we now own the domain for this web page and it is now officially www.gavinowens.com. The old link will still work but we wanted to shorten the address so that it will be easier for people to find.

You can find our store here.

Happy shopping!

Wheelchair Swing...

This past week we made a trip to duPont to pick up Gavin's Omegaven at the pharmacy and made a stop at the hospital playground. Thanks to my friend Kate and her incredible advocacy skills she was able to convince duPont to install this new wheelchair swing so all kids can enjoy the playground. As you can see from the photos I can only assume Gavin enjoyed it considering he was fast asleep and stayed asleep the entire ride -- with Madison's crazy pushing and all!

We got word yesterday that Gavin's blood counts are falling and we will need to come in next week for blood and maybe IVIG. Something is up with our little man, but Adam and I don't really know what. He is taking on that yellow grey shade and just looks a mess. I think it might just be fatigue but who knows. We have another two and a half weeks of antibiotics coverage so I'm praying hard that we can last at least another three weeks at home. We took cultures of Gavin's belly and bowel fluid this week so we will get a good idea just how bad the bacterial overgrowth is.

Here's to a nice relaxing weekend!

Amazing...

Adam -- do you understand how amazing you really are? Not only are you the sole financial provider for our little family but you provide for us is so many other ways. Even after your stressful days at work you are willing to do what ever it takes to make our children happy and help ease my burden. You are an amazing husband and father and God has done amazing things in you and through you. I could never ask for a better person to venture through this crazy life with.

I can't wait to see what this next year brings.

Happy Birthday.

Going To School...

Our little girl is going to school. I can hardly believe it yet in many ways I feel like she is so ready and deserves a little bit of normal in her life. I have so many fears about sending her, fears that many parents do not have and I'm sure find it hard to understand. Madison has grown up in a hospital. I remember when Madison was a little toddler -- only 15 months old, toddling around the halls not even reaching the counter of the nurses station. Now she is sitting at the desk paging staff over the intercom. I really pray that she can find her place in the real world. I know she can. She is a bright social little girl, but I still have so many fears. I fear that she will one day have to face that fact that our life in not normal. Right now she has no clue. I truly believe she thinks the way we live is how every little girl grows up -- what will happen when she sees there is another way?

Will she want out?

I can most likely guarantee that none of these thoughts ever probably enter her little four year old mind, but I can't help but wonder -- I am her mommie after all. Tonight is Madison's Pre-K orientation. It's a big change for Adam and I. It really pushes our little family to the next level -- having a child in school. Are we ready? I guess the real question is...

Is the school ready for my amazing little girl?

Busy Day...

Today was a crazy day. A good one, but very crazy. We started off the day at the YMCA at Gavin's special needs gym time. We got Gavin up out of his chair and in leg braces, which allowed him to stand with support on the trampoline and do a little jumping. He was able to tolerate it for about two minuets and then asked to get back in his chair. He had fun and it was fun to see him all stretched out. Gavin is one tall skinny dude! We then headed out to the pool for a little swim time. Madison is becoming a little fish and is totally proficient at swimming in the deep end and doing all kinds of mommie-watch-this type tricks.

We then headed to the lab to drop off Gavin's blood and then headed out to the park to occupy our time until it was time to meet Daddy at Ride-Away to have our van looked at and discuss our options for making it more accessible for Gavin. We heard last week that Gavin's power chair was approved and it should be making it's debut in the next two months. Which puts a major rush on getting our van ready for the new wheels and also our search for a new home. Ahhh!!!

Gavin is doing pretty good. He is having some good periods of play time, which makes me very happy to see. Today he started up with some swelling and paleness. Not sure what is up but most likely his body is just starting need a little more support as far as blood products and a little more rest. Tomorrow will be another busy day -- but I'll save that fun stuff for another post!

Our Family...

Madison created this work of art this morning -- made me smile, very big. Just wanted to point out daddy's hair and the fact that she wanted to make sure that I knew that there was a difference between adult teeth and baby teeth. Of course there is the ever present ostomy. I find it really interesting that in the past Madison always would draw lots of lines and pumps coming from her brother -- I'm not so sure she really sees the medical equipment anymore. Kinda cool. In fact, most children really don't take note of Gavin's tubes unless they sense their parents being uncomfortable around Gavin. The one thing that seems to bother children the most is the mask Gavin often wears over his mouth to protect him from germs. Today I over heard a child ask his mother, "why does that baby have a diaper over it's mouth." I would have loved to hear the explanation.

Anyway, things are rather quiet around here. Gavin is doing ok, though still having periods of lethargy. We are continuing on all four antibiotics so that should help keep him clean for the next week or so. We are just trying to enjoy every second at home.

So happy to be home.

Home...

We are home. Gavin line placement went well, though his chest looks like it has been through battle. Please pray for a smooth transition back to home life. Gavin is acting a bit off, which has me feeling like I can't settle in yet. He is on four antibiotic infusions along with his TPN, Omegaven and D15 mix, which means lots of work for Adam and I. I know we can do it but sometimes it gets a bit overwhelming.

Thanks for praying and pushing us through another bump in the road.

Thursday...

Nothing new to report. Gavin's cultures continue to be negative - that's exciting news. Gavin continues to have vomiting but overall seems to be doing a little better. We actually saw his smile a bit today and he stayed awake and played or a few hours at a time.

Tomorrow he is scheduled to get his central line placed. It actually was supposed to happen today but we got bumped. Madison went home with my Mom for the night and she is sporting a pretty nasty cold. Please pray that she gets well soon not only so that she feels better but Gavin does not get sick.

Vomit...

Lots of vomit. That about described our day yesterday. All of the sudden Gavin's Jejunostomy decided it no longer wanted to drain causing violent vomiting and a very unhappy Gavin. X-ray's were ordered to check for obstruction but nothing was seen on film. I have a feeling he cleared the obstruction as, without going into the gross details, I'm not sure how he was able to vomit as much as he did. Anyway -- he seems to be doing better now, though he continues to wretch and make me jump, but that's pretty much baseline for him.

Yesterday Gavin had an EEG to look into his seizure activity -- I haven't heard of those results yet. Other than all the tests being done it has been so crazy around here. I can hardly remember the days when Gavin was just a baby in the crib and little Madi was just toddling around the halls not causing too much trouble. That has all changed and needless to say raising both my children in this institution is probably the hardest challenge of Adam and I's life.

Gavin is doing better though he still struggles in many areas. Our docs are confirming our fears in that we are most likely starting to see progression of the Mitochondrial disease -- it is a nasty and unfair process that no parent should ever have to witness. His little body is just becoming tired. With that said he is still our happy boy, maybe just not as happy as he used to be.

We are almost at the 72 hour mark for negative cultures. Yippie -- I think we made it. Hopefully Gavin will be sporting a new piece of hardware in the next day or so.

Tuesday...

It has been a crazy past few days. Yesterday was jam packed with all kinds of testing to ensure that the fungus did not make it's home in other part of Gavin's body. So far things look clear and the fungus is isolated to his itty bitty sliver of jejunum and his PICC line. Yesterday Gavin received two rounds of blood and this evening he looks like a cherry tomato with bleach blond hair. It's kinda funny because even though his hemoglobin would still technically be considered anemic, he actually is as high as he typically gets even with multiple transfusions. His spleen and liver tend to just trap a lot of RBC's. In addition to the blood he also received one round of IVIG. His white count did come up to 2.0 and his ANC is 500. Not great -- but also not too bad for Gavin. He was running fevers last night but today his temps are pretty low. Besides being very cranky he seems to be doing better. He actually only slept about 18 hours in the past day, which is great considering this past few weeks.

Our plan right now is to still sit tight and wait to see if the cultures to grow. Unfortunately just because they are currently negative doesn't mean they will stay negative. Gavin's body is overflowing with antibiotics as well as anti fungals so it may take the bacteria a good long time to grow out in a culture. We are all hoping for the best but we all understand reality. We did do cultures of both Gavin's stomach fluid and also his ostomy. The cultures were a little shocking, in that despite the antibiotics and gut decontamination meds, not to mention that fact that Gavin only has a small bit of bowel, the cultures exploded with bacteria. This is very concerning and almost guarantees infection.

Anyway -- thanks as always for thinking of us.

Update...

Just wanted to give you all a quick update. I brought Gavin into the ER last night as he was becoming to unstable for home and could not wait for our admission today. While in the ER they were able to place a femoral line and pull the infected PICC.

Last night Gavin received blood and will receive more today along with another round of IVIG. He seems to be feeling a little better.

Please pray. We absolutely need this new line to stay clean for at least three days.

Three days.

The Phone...

My heart jumps anytime my phone rings. My mind automatically assumes it's the hospital calling to give bad news and unfortunately I'm usually right. Last night we received a call from Gavin's Doctor who informed us that Gavin's cultures are now growing fungus -- our old enemy previous to Gavin' bowel removal. Not only is it in the line but it is also growing out his bowel fluid as well, which means it's made it's home in Gavin yet again.

Gavin will be admitted on Monday to start the process of getting him clean. We plan on giving him the blood products he needs as well as more IVIG. Needless to say we are all very bummed -- but we are focusing on having a good weekend.

Wednesday...

Things are going fairly well in the Owens' household this week. Gavin is holding his own, which is always a good thing. We got an email this morning from Gavin's Doctor informing us that his PICC line cultures are still positive for the Enterococcus. I'm not sure what the plan is. I think if they do not clear up in the next few days Gavin will be admitted to have the line pulled and kept inpatient while we try to clear this infection. Either way is fine with us -- at this point we just want to get him "clean." He has been very sluggish and has been sleeping most of the day way -- as you can see in the photos, he prefers to just have ducky over his head and rest.

Yesterday we went and looked out a few potential homes -- no luck. Are needs are a bit unique and we need to be a little picky. Unfortunately our budget doesn't allow for being picky, but Adam and I both agree that God has the perfect place in mind, we just need to be patient. We are going to look at another place tonight. Say a prayer.

Today more labs were drawn and we are hanging out at home today waiting the arrival of Gavin's new pulse-ox. We now know that Gavin is dropping his O2 at times so this way we can all feel a little more safe at home.

Just a day in the life of the Owens' Family!

A Little Hope...

Today we spent the entire day down at DuPont. Gavin started out with labs, which came back pretty poor. His labs show that he is still pretty neutropenic -- white count at 1 and his immunoglobulin levels at 300. His hemoglobin was 5.2. SO needless to say we spent the day tanking our little fighter up. He got a hefty dose of IVIG as well as some blood. Because his levels were so low we were not actually able to give him as much blood as he usual gets in an effort to prevent any cardiac troubles, so most likely we will receive more blood next week.

Gavin's Doctor informed me that Gavin's cultures from his PICC Line are growing out two bugs, which both we transferred from his previous line that was pulled on Friday. The one bacteria looks like it has "morphed" and is now resistant to the antibiotics Gavin is on, which means another change in medication. Besides sleeping most of the day and night, Gavin is doing well. He was running fevers last night but otherwise stable.

I think Adam and I are feeling a little better today than earlier this week. Sometimes we just need to get over the shock of the things we hear coming from our Doctors mouths. We need to process and then keep on living life. We are making several changes mostly to deal with Gavin's new issue of severe immune suppression. There is talks of starting a G-CSF injection which is used in many cancer patients to boost white cell production. We are up for anything, so we'll see what the docs decide. We are also hoping to keep Gavin's Igg levels high, which will most likely mean we will be getting weekly IVIG infusions.

Thanks as always for pushing us through this past week. We never come here looking for sympathy or pity but we always find some sort of comfort in reading all the comments, knowing how many people are standing behind our little guy.

Detailed Update...

To be perfectly honest I'm not even sure where to begin this update. We have so many thoughts spinning in our minds that it is sometimes difficult to explain anything in words that anyone can understand. I guess the best way of summing up our present situation is to say that Gavin has again reached a critical point in his is health. There are two ways to go from here -- things can either get a little better or things will get much worse and he will not be able to recover.

The main issues we are dealing with right now are this increase in severity of infection, his more severe response to infection and his central line access. We were all hoping that after Gavin's bowel removal that our life would change for the good, and initially it looked like Gavin had taken a huge turn for the better, but then these past two months he has been hit by multiple, multi bug infections. Right now we are trying to figure out what is exactly going on and what is causing the increase in infection. The first reason we know of is that Gavin's immune system has been declining over the past year. He spends much of the time being neutropenic, meaning that he is unable to fight any kind of infection. This is something that we can help thanks to the IVIG infusions we are wanting to start more frequently. The other obvious issue is that the small amount of jejunum and stomach that he has left is pretty much useless and often leaks bacteria into his bloodstream, which then attaches to his catheters. The last issue, which at the present moment is worrying Adam and I is Gavin's fascination with picking off his ostomy bag and giving himself and bath of bowel fluid and blood. We are trying out best to try to prevent these occurrences but Gavin is determined to defy all attempts to restrain him. Ostomy fluid bathing and compromised immune system is really and huge issue. S0 -- we are working on trying to find a way to ensure that Gavin is not a threat to himself.

Besides the infections we also have the issue of central line access. Basically when the time comes when they can no longer place a line we will have no choice but to be finished. That is enough information to scare the crap out of anyone. Gavin's chest wall is covered in scar tissue making placing a catheter increasingly difficult. The surgeon had a talk with me this week that literally shook my world -- the reality that Adam and I will have to choose at some point when we will say we are finished. We discussed other options that have been brought up in the past such as transplant but they are all quickly shot down as Gavin would never survive a transplant as are most intestinal transplant centers refusing to transplant a patient with the Mitochondrial diagnosis due to the poor outcome. Again -- simply heartbreaking.

So here we are. On Friday Gavin had his central line removed and they were able to successfully place a PICC line in his arm. Today I got word from the doctor that Gavin's PICC line is now infected with the bacteria that was on his CVL.

I'm not sure what else to say. We have a new plan to start Gavin on frequent IVIG infusions and to try to keep his levels above normal to help him fight infection, but this really will not be effective until we get him "clean." We have a plan to go down on Tuesday for blood and the IVIG and we are saying a prayer that we can treat this bacteria that traveled to the new line before the infection is to sticky.

So -- if I haven't lost you all, you are simply amazing. Yes, we are a little frazzled right now but I think we still have hope. Gavin can give anyone hope -- just one flash of his award winning grin and my mind is taken away from all things negative.

Thanks for your prayers and support.

Tired...

Sorry for the lack of updates. We are home after two long and emotionally exhausting days at duPont. Right now we are all just in need of some good sleep.

I'll be sure to give a better update tomorrow.