Madison's Visit...

Here is the video of when Madison first saw Gavin yesterday morning. She was so brave. Notice how she is gently rubbing his head -- so stinkin' sweet!

Madison sees Gavin's new belly... from Adam & Karen Owens on Vimeo.

Saturday Morning Update...

Gavin is doing great! You look at him and would never know the trauma he has endured this past week. He is still heavily medicated but he doesn't seem to be breaking through the meds as much. We got him up in is chair yesterday for a short while and he seemed just fine, as far the pain in his belly. He is still running temps but I think we have all decided that this is just part of Gavin's Mitochondrial issues, another way his body responds to imbalance and change. We'll see. Cultures are still being drawn daily.

I think we just might actually get to move up to the floor today! I expressed this morning that I would prefer to go up there, mainly just because I really would like a bathroom and shower in my room, not to mention that I really want to bring Madison back to stay with us. I think it will be good for Gavin as well.

I can imagine that some of you have questions as for as the surgery and about Gavin and our family in general. Please feel free to ask them. It's going to be a boring weekend and Adam and I have plenty of time to do a little Q and A.

It's Here...

Omegaven is here -- in this very hospital! I can't even believe it. I'm not sure when it will begin as I think we may want to wait a few days until Gavin is more stable so we can prove that there are no reactions.

We are all so thrilled -- We love fish!

Friday Afternoon Update...

Baby steps -- that's what I keep telling myself. Gavin is doing well and making progress. It's interesting how at one moment an attending can come in and Gavin looks so bad and worries them, and then the next hour another doc will come in and Gavin is laying there trying to change the DVD in his player. I think He is messing with our heads. He is still on so many pain meds which include Dilaudid, Valum, Toradol, Nubian, Benedryl and Tylenol -- but they seem to be doing the trick. He is still spiking fevers up to 103 but we are thinking at this point that this may be due to his hyperinflammitory issues.

I was able to sleep over at the Ronald McDonald House last night while Adam spent the night at the hospital. Everyone keeps asking if I as able to sleep -- obviously they don't know just how tired I was. As soon as my head hit the pillow it seemed like it was 5am. I showered and rushed back to the hospital feeling a little more "with it".

Concerns still involve the edema on his side and also his hypertension, which may be just due to pain. We are really hoping to move up to the regular floor within the next few days.

Thursday Evening Update...

** This photo is prior to surgery -- sorry for the confusion.

I think we may have made some progress today --- do you hear my sigh of relief? Although Gavin continues to be in very intense pain we did manage to break his fever with the toradol, which provided him with some relief. The toradol only lasted a short time but at least it gave Gavin -- and us a break. The ultrasound of his belly look pretty good. There was not as much fluid as thought but there was some concern about the thickness of this abdominal wall. His one side has a large section of edema, so we need to keep a close eye on that.

The photo above was the day of surgery -- doesn't he look great? I was thinking that I just needed to look back to help me look towards the future. This will end, Gavin will get through this.

Lets pray for a nice quiet evening here in PICU room 17.

Thursday Morning Update...

Gavin is doing ok. His pain is still a huge issue but we are working hard to stay on top of it. He was switch yesterday from Morphine to Dilaudid and we did see some effect but still it does not seem to be cutting it. He is on a continouse drip and then he has been using his break through dose every two hours. After rounds this morning we gave him a dose of valium, which gave him about a little over an hour of relief. He is still ok but he is just moaning rather than crying.

In rounds this morning we talked about several things. His pain is an issue and we need to look to make sure there is nothing going on with his belly. We just did an ultrasound and they are expecting to see lots of fluid, which could cause issues later as far as a possible infection. I was told we may need to place a drain. Gavin will be getting blood today as well as lots of Albumin as his levels are still low despite is transfusion yesterday. We are going to try to start TPN tonight as long as he remains stable this afternoon. He is still running continous high fevers despite the tyolnol, but we did get permission from surgery this monring to try some tordal, which is kinda like Mortin only IV.

Adam initially went to work this morning but was able to come back to the hospital to help me out. Needless to say I still have not slept, but I was able to get a shower this morning, which does wonders for my spirit.

Gavin is looking really good. If it wasn't for the pain I'd be asking to go back to the floor. His belly looks amazing -- I have to remind myself that he just had organs removed. This video is yesterday -- this is one of his better moments.

****This video does show Gavin's belly -- just so you know.

Untitled from Adam & Karen Owens on Vimeo.

Wednesday Afternoon...

Gavin is doing a little better this afternoon as far as pain control. It was decided in rounds this morning to put Gavi on a Morphine pump in addition to the morphine dose every 2 hours. He is still waking up moaning but much less than earlier this morning. No major plans other than to try to hydrate him, which has it's associated complications. Lets just pray again for lots of pee. He is still running a fever and no word yet on the cultures.

At this point I'm feeling a bit better. My two main concerns are his fever and his coloring, which is looking rather pale/yellow. I know he is in amazing hands here in the PICU so I'm just trying to sit back and relax, which for those who know me understand this is very difficult for me to do.

We did talk to the surgeon who said he would put back in Gavin's previous gtube for me. Right now he has a mic button, which everyone seems to love, but I love the peg tube and so does Gavin. In fact Gavin keeps trying to find his tube and it's not there, which has him frustrated. His PEG tube has become a source of comfort for him -- weird I know, but so true.

Wednesday Morning...

I really wish I could just blink and this all could just go away. I never realized how difficult this would be. I'm not sure how I just "forgot" to think of the aftermath and all the suffering. I know we as a team made the right choice but I'm having a hard time sitting with that this morning. Then again I got zero seconds of sleep last night -- not much help for my already frazzled state.

Gavin is stable but understandably struggling. He kept a high temp all evening into this morning. He is in an indescribable amount of pain that we still do not have a handle on. The spinal block that that gave him in the OR did not take and he seems to be chewing through the morphine. We have also tired a few other things but none that has given him any relief. He has been dosing in and out but he wakes to a panic of pain and shaking.

Respiory wise he is doing great he was able to be extubated last night and is not requiring any O2. Fluid wise he is not doing so good. His labs are a mess this morning and he is very dry in his vessels yet leaking most of his fluid in his tissue and now the huge empty space in his belly. So this plan today is to give him more albumin and lot of fluid.

I hate the ostomy. I hate the new gtube. Just want to put that out there.

Adam went back to RM house late last night to get some sleep to that he can relieve me this morning for a few hours so I can shower.

This just really sucks.

Really, really sucks.

I'm ok, just need to get some sleep.

More Prayers Needed...

Our biggest fear with this surgery was the risk of Gavin becoming septic as a result of disturbing his bowels -- it has happened. His fever spiked over 104 and we are having a tough time getting his pain under control. We have increased the coverage of both anti fungals and antibiotics and we are awaiting blood cultures.

The other issue if the fluid. He has large amounts of fluid on either side of his abdomen and we are still needing to bolus him more due to his rising lactic acid levels.

To be very honest -- we are both very scared right now. I'm not so sure I was prepared for the post op period. He looks so terrible, the sickest I've ever seen him. Please pray that they can get his pain under control.

Surgery Update...

Gavin went back to the OR around 1:30. Adam and I are feeling ok but my nerves are jumping. He was heavily sedated when we left so there was not crying and he was not scared, which makes me feel better. We expect the surgery to be several hours. I'll try to update as I hear from the docs.

***3:00 Update: They are attempting to do the enterectomy via laproscopy with six incisions. The laproscope is in and they are beginning to tie off the blood supply down at the colon and work their way back up. He is doing well. There is a chance that they will need to open him up, but we are hoping to avoid that.

***4:15 Update: Gavin's large bowel and part of the small bowel is out. They still need to take out the colon, gallbladder, make the jejuntostomy and then place a new femoral line. They are thinking we have at least two more hours. Thanks for your prayers. If they are able to pull this entire thing off using the laproscopy it will be amazing! Thank you Lord for technology.

***5:00 Update: Gavin is doing great! All the intestines are out and they are currently working on the colon. They were able to do all the "cutting" or resection of the bowel outside his body, which drastically drops the risk of sepsis after surgery. We are all feeling pretty good, just ready for this to be over. This is great therapy for me to process everything they come out and tell me -- and is passes by some time. Looks like we still have 2 hours to go. Can't wait to see my little boy!

***6:30 Update: Oh that colon! Seems to be giving them a hassle -- might be a little longer, still have quite a bit of work to do. They say he is still doing great! I think we may try to grab some dinner soon, we'll see if my nerves actually allow me to eat it.

***7:30 Update: Gavin's colon is now completely out and they are working on the gallbladder. I was told this portion takes about an hour. After the galbladder they will pull the jejunostomy out through one of the laproscopic incisions and then rewire his fem line. We are getting very tired. Almost done.

***8:30 Update: Seven hours later and Gavin is done!!!! They are in the process of placing an epidural type form of pain control. We will be headed to the ICU and I will be sure to update in the morning. We thank you from the bottom of our heart for the prayers and support you have given us.

The Big Day...

Well tomorrow is the big day -- the day of Gavin's surgery. To be honest, I am so scared. I really hope this is an answer, a break. I'm so tired and I really don't have an update. Today was a day of waiting to talk to many people involved in the surgery.

Thanks for your prayers. Gavin's OR time is at noon.

Puff Daddy...

Things are status quo. We had lots of visitors this weekend which was so wonderful -- thanks to all who made us meals as well. Today we increased Gavin's fluid and we are praying that he is able to pee it all back out. The video is from earlier this week. So sad looking, yet still so darn cute.

Tomorrow my grandmother will be having surgery to repair her broken neck, please pray that all goes smoothly and she is able to regain some feeling in her body. We believe God can do it!

Saturday Update...

There is nothing to report -- and that is a beautiful thing! Madison and I had a wonderful time last night and I really enjoyed sleeping in a bed -- a real bed! Gavin continues to improve. His swelling is almost non existent and he seems to be pretty happy. I must admit that I'm getting very anxious about this Tuesday but I'm trying to just relax and try to have some fun this weekend spending time together as a family.

Until Next Time...

Friday's Scoop...

Things are still relatively quiet today and we hope it will stay that way until Tuesday. Gavin is doing better today but we are still seeing fluid retention especially in his face. The albumin we gave him two days ago didn't raise his levels so we giving him another infusion today. His white count is also back down to one -- so pray that we can keep him healthy over the weekend. We have a few other slight concerns but I'm not going to even mention them because they are small and hopefully they will stay that way.

Gavin, Madison and I went down to the gym this morning for some therapy time, which was a lot of fun. Gavin's hasn't had any therapies in a long time due to him always being sick, but he feels good right now and I wanted to try to find him some equipment to use. We found a great desk like table to place in the crib for him to play on and color, while sitting in his chair. So far, it's a huge success! Madison was just thrilled to see a part of the hospital she has never seen.

Madison and I have a date tonight. We are going to a local cafe for some cupcakes and then we are having a girls night at Ronald McDonald House. Truth is -- she will probably watch tons of TV and I will hopefully fall fast asleep! Madi and I both need some time away together so Daddy will be taking the night shift here at the hospital.

Thanks so much for all the responses on the meals. If you are from our church look out for some information on Sunday where you will be able to sign up on a list. If you are a friend from elsewhere you can contact my good friend Dawn who is helping me coordinate all this and can be emailed at dawn@mstar.org for more information. If you have already contacted me and we made arrangements -- thanks!

You all are simply amazing. I know I say that a lot, but your kindness has completely touched our lives!

Thursday Morning Update...

We have heard that the surgery will be done on Tuesday, which is a little later than expected but the the two surgeons, Dr. Dunn and Katz need a little more time to map out their plan. We just need to pray Gavin stays infection free for the next 5 days. Gavin's fluid retention is still a problem. He was looking much better least evening after the lasix but puffed up again overnight. His eyes are as bad as the other day but he certainly still looks very swollen.

It's going to be a long weekend. Not only to we now have so much more time to let our mind think and worry but my grandmother suffered a major heart attack and other injuries related to a fall and is also very sick right now and we are not sure how things are going to go for her. We are asking for prayer for our entire family today particularly my mom who not only faces the reality with her own mother but also the situation here as well.

Many people are asking what they can do for us besides pray. I don't like to ask for things but one way to help is meals. We rely soly on food purchased from the cafe which, with an extended stay not only gets expensive but also monotonous. Besides that -- your prayers, support and messages on this site and through email are really helping us through this stressful time.

Wednesday Evening Update...

What a day -- a very long boring day, which is a good thing. This big issue of the day is Gavin's edema. He woke up this morning with both his eyes swollen shut with fluid. He is looking a little better this evening after some albumin and lasix but his eyes are still very squinty.

We are going to attempt to give him a custom mix TPN solution and see how his electrolytes do. besides that fact that he is still not making enough urine his numbers are looking better. Unfortunately the temp femoral line is not "central" enough to run his usual D22 mixture so he will have to get by with D12.

He is still pretty miserable. We gave him some morphine last night which gave him some relief for a few hours. We have been sticking with Toradal today but we have some morphine on hand for this evening in case he needs it. I'm hoping he will do fine without the additional meds.

The last issue we are watching is his downward trending blood counts, I would not be surprised if he needed some more blood products before the upcoming surgery, which we still don't have a definite date or time.

You all are amazing and the love and support we are receiving through this site is almost overwhelming. Thank you all so much!

This Just Might Change Our Life...

Ok -- so Adam and I want to get everyone up to speed of all the crazy decisions we have been making over the past few months and even more so today. As I have explained before Gavin is very sick right now and has been getting sicker as the months are going by. This decline in health is mainly due to his failing bowels which are in failure due to the underlying Mitochondrial Disorder. Gavin's bowels have deteriorated so much that he is considered to be in end stage intestinal failure. From the study done last week we have learned that Gavin has no peristalsis, or movement, what so ever in the upper portion of his bowel and stomach. Because of this all the fluid that is normally present in the GI tract, which normally moves through and eventually becomes stool, in Gavin, is left to just sit there and rot. Because Gavin's bowel wall is so weak, soft and thin the bacteria that grows due to the lack of movement is then forced through the bowel wall into Gavin's blood stream causing him to be septic, which has been occurring on average, on a biweekly basis. Each of these infections has the potential to take our little boys life.

Because of the condition of his bowels and the realization that they will never heal but only get worse over time we have come to the point where they need to be removed. This is officially called an Enterectomy, the surgery that will be performed on Gavin sometime late this week. The plan is the cut out the entire small bowel, large bowel and colon, leaving a very small section of jejunum, which is the top of the small bowel, which will be brought out through Gavin's abdominal wall and will resemble an ostomy. The rectum will also be closed, in what they call a blind pouch. We need to keep a small portion of the small bowel in order for the liver and pancreas to drain. Gavin will still have a drainage bag coming from his stomach.

This surgery could change our entire life as we know it. This will not cure Gavin of his disease, which is degenerative and could cause other issues as time goes on. This surgery is a way to give Gavin and our family quality of life. This surgery will place Gavin's liver at great risk, but we are hoping that the Omegaven will help save his liver from failure. This surgery has a lot of promise but it also holds many risks. Adam and I have been very well educated on our decision and we both feel this is the way we need to go. We really have nothing to loose. Right now Gavin's life expectancy goes on a day by day basis and that is no way to live. We want our baby boy to be able to grow, thrive and develop all of which are being hindered by the frequent episodes of sepsis.

We thank you all in advance for you overwhelming support. I really hope you understand what a powerful impact your support and prayers have on our life. Right now we need you all more than ever. Even though we are very excited about the promise this surgery and next step has we are still very scared. God is an amazing God and we really believe this just might be the break our family needs.

Big Prayers Needed...

The time has come for us to make a life changing decision and plan. Adam and I will be having a very important meeting for discuss a surgery that Gavin will most likely be having later this week. We want to talk with the doc before we give you all the details but we really need some big prayers. We are both kinda tired but we need some serious clarity of mind this afternoon.

And -- the pee pee prayers are working! Gavin made a small amount of urine this morning about 30cc's and it looks like his kidneys are in recovery. We spent the day down in ultrasound looking at his vascular system, liver and kidneys and then headed to echo to take a look at his heart. He also had an eye exam looking for fungus in his eyes. So far all clear!

We are now just waiting to go to the OR and get that yucky line out. I'll give a detailed update tonight -- be prepared it going to be a long one.

Pee Pee Please...

Gavin is officially in Acute Kidney Failure with his kidneys working at about 30%. This is all thanks to our friend Ampho who has helped us but also causes so much harm. We have been working hard all night to correct all the major electrolyte imbalances and we still have some ways to go. The really bad part about all this is that Gavin's one remaining luman of his central line will not give us blood so he has had to endure so many sticks throughout the night. What a way to wake up!

We are waiting to hear on an OR time. We need this line out ASAP, as once the fungus is gone it will help him to help us balance his Numbers out. His gastric output also hit an all time high yesterday, which doesn't help the dehydration we are fighting.

Please pray for some pee. It has now been 24 hours and we have gotten 2cc's out. I know it will come eventually but it makes us all nervous waiting for some sign of good kidney function.

Update...

We are here -- inpatient that is. I'm actually feeling a bit better being in this place -- some closure to this horrible week. The plan is to pull the line tomorrow, after an ultrasound so we can look at the clot and just make sure there are no dangers surrounding the removal. Gavin is doing ok -- he obviously is not 100% but he's hanging in there. The ID doc came by and confirmed that this fungus situation is so difficult. We are trying to keep him healthy by giving him treatment but the treatment we are using is selecting more resistant forms of yeast, which is scary. Sadly, there really is not much we can do about this.

Adam and Madison just left for Ronald McDonald and Gavin just fell asleep. We are about to start Gavi's Ampho and I think I'm going to run to target to pick up all the things I forgot at home.

Thanks so much for all your prayers -- seriously you all are amazing. We are so grateful for the huge support you all provide. I'll update again tomorrow.

The Plan...

So here is to scoop -- Gavin's line is unrepairable.  We tried everything including TPA and HCL and nothing will make it budge.  Thankfully Gavin has two lumans but he really can only be managed with two, so we need a new line.

Then we throw in the element that Gavin's blood cultures are growing out fungus.  As you all know by now -- that's a very big deal.  Somehow I was able to convince them that there is nothing diffrent that would be done at the hospital than Adam and I would do here at home, Actually I didn't really have to convince them, the doc actually just came in and said "ready to go home?" The plan is that we will run his basic D15 fluids and run his antibiotics with that until he is admitted on Monday.  If he is showing any signs of distress we will bring him either to our local hospital and have him transported or we will bringing him right down.

I feel better this morning.  A semi-good nights sleep in ones own bed does wonders for the spirit.  Thanks so much for all your encouragement.  Please say a prayer for one of our transplant friends who was admitted with RSV -- this family needs a break as well.

The Brutal Reality...

The truth is -- our life sucks right now. I wish someone could explain to me what our family has done to deserve such frustration in our lives. Things that you are not aware of include the car accident Gavin and I were in on the way to the hospital yesterday. I haven't told you yet that as I sit here in the ER Adam and Madison are on the side of the road awaiting help in a broken down car. I haven't told you yet that the doc came in and said that Gavin is now growing fungus in his line.

God we need a break. The very basis of my faith is being shaken here. We are so tired. We just need a small glimpse of hope in this chaos.

We are waiting to hear if Gavin will be admitted. I really hope not. He is not symptomatic of the fungus yet and is already being treated with the Amphoteracin. God -- please let this wait until Monday.

In The ER -- again...

Here we are once again -- the third or fourth time this week. Gavin dang line is giving us trouble. I've already been sitting here for 90 mins just waiting to begin the TPA.

Did I ever mention how much I hate doing this?

Lets pray the line can be fixed -- one of these days.

The Results...

We are done. It has been another long day I would like to forget. Things need to change around here -- we'll work on that another day, right now Gavin is my main focus. Dr. Dunn, who is head of transplant and rather brilliant man initially came out and said that it looked like Gavin J tube was down to far and his bowel, due to being very soft actually had bent around the tube and was causing to irritation to the bowel wall, which could eventually perforate it -- not good. The placed another, shorted GJ tube in and injected more barium. They saw that Gavin's bowel are not moving at all -- basically they are paralyzed. All his fluid is left to sit and rot and eventually seep through the bowel wall causing his chronic infections. He did say that we are doing a good job at keeping his bowels empty. The constant draining of his tubes in combination with the suction seems to be working , which is very good. At this point, if we were not able to drain the infections fluid out it could be even more dangerous. Right now Gavin is doing Ok. We were able to suction a lot of the barium back out giving him some relief, but I'm sure it is going to be a long night.

So where do we go now. I don't know. Dr. Dunn said that ideally Gavin would be a candidate for transplant but due to his overall condition and the mitochondrial issues transplant is probably not going to be a cure for him and may make his other issues worse. We are looking into other options but we are going to wait until we know for sure what the next step is before we are going to make that public.

Thanks so much for holding our family up in prayer today.

Yesterday and Today...

Most days I wake up ready to tackle the day and do all the things that Gavin requires of me -- yesterday was a day where I just wanted to throw in the towel, hand in my badge and sign off.  It was a very bad day.  It started with a preop appointment at 12:30.  I sat for three hours with both kids.  I didn't see anyone until about hour number 2 and when she came in I had to spend what felt like forever going back over Gavin's past medical history -- which would even be difficult for the best historian to repeat.  They decided they wanted labs.  Great.  The actually office does not draw from central lines but a nurse there, who has taken car of Gavin before offered to draw labs.  She had trouble getting blood to come back and only got about 5cc's.  I offered to help and i could tell she was getting flustered.  I know Gavin's line like the back of my hand -- I use that line 24 hours a day for the past 2 years.  I know Gavin, I know his line, I know how his blood flows and I also know how at times his blood clots.  She refused to let me help.  She walked out of the room with blood left in his line to get more supplies.  I'm sure all my CVL mothers are shaking in their boots by now.  Well needless to say she comes back and now can no longer flush the line.  I has clotted off.  She doesn't understand how it could clot off  " lines just don't clot that quickly" -- yes they do.  I'm not really upset with that person but it's the theory that once a parent enters the hospital their child is no longer theirs.  My job is to protect my child's life and Gavin's line is his life line -- his very existence depends on that small string of plastic implanted in his chest.  

Besides the line drama, no one really seems to know what the heck in going on for today.  We don't know the game plan as far as how they are going to do the small bowl follow through.  There are so many not so typical issues playing into this because Gavin is not the typical child -- no child with Mito is.  

After storming out of preop with both my children, a blood clot in a CVL and my threats that I'm taking down the entire surgery department, not to mention the many looks out in the waiting room as I storm by with 50 million tubes hanging out of my child and a rather disheveled 4 year old who has been cooped up in a small room for 3 hours -- we headed somewhere, which eventually ended up in front of our social worker and Gavin's covering doc who so kindly helped figure out a plan and clam me down.  We spent the next few hours down in the er unclogging the line, which was saved.  Thank you Jesus.

So here I am.  It's 6:30am and I'm getting ready to head back down to Delaware for the fourth time this week.  I'm tired.  I'm still emotional.  I scared for Gavin today.  I don't want to see him in pain and I'm scared for a possible infection following the study.  I'm sure he will be fine but will I be fine is another question.  Will the OR staff be fine with this ranting mother --we'll see.

I really am ok.  Some days, as any mother with a medically intense child would say, I'm just done.  But in reality as long as I return to the hospital with my son still with me -- I'll keep coming back.  I'll fight every battle to come and be darn sure I will protect my child - and his line (who I often refer to as my other child).  

I have triplets.

Amazment, Great News and Not So Great News...

Can I just say how amazing you all are. Do you even realize how many cards you all sent our little girl? I've lost count as they have been coming by the stacks! This means so much to Adam and I. You all are not only apart of Gavin's life but you really hold our entire family up and help support us in so many ways. Madison is going to have a wonderful day tomorrow -- and I'm sure another load of fan mail awaits our little princess!

The great news in that we got the final approval for the Omegaven today and it has been ordered from the Pharmacy in Germany. How is it being paid for? Well Mr. Dupont said that if our insurance will not cover the expense than the hospital will be billed. I'm not sure what that means but all I know is that it was ordered and we should be coming in for an admission soon to begin the beautiful infusion of white gold! (I learned that term from some other fish loving families across the USA)

The not so good news is that I'm sitting here in the ER with Gavin. Go figure. Gavin's central line clotted off this afternoon after one of his med infusions. I packed up both the kids and took the hour plus drive to the hospital to have is TPA'd (blood thinner/clot buster). The line was "ballooning" pretty bad but the TPA seemed to do the trick. After we got home a few hours later I pulled the TPA back and flushed and ... *POP*, the line broke where it had been ballooning earlier this evening. So after a whole ten minutes home Gavin and I headed back to the ER where we will now sit until the early am hours.

Things could be so much worse and I am so grateful that Gavin is stable this very hour.

Thank you God!

Lets Make Her Smile...

Next week on February 11th is Madison's 4th birthday -- I can't even believe it.  Madison truly is an amazing child and has endured so much instability and stress in her short four years of life and I really want to make this a very special birthday for her.  Gavin so often gets more of our time and energy and I want to make this week different.  So here's the plan...

We are asking for your help!  Lets shower Madison with birthday cards to help show her that she is just as special as Gavin -- and she deserves the best.  This will literally rock her world!  She loves mail, and always checks to see if anything is for her.  So many aspects of our life are very difficult for her to understand but every child knows that a birthday is special -- lets make it extra special.

I don't want to post our address online (for obvious reasons), so if you do not know it please email us and we will make sure you get it ASAP.  adamandkaren@comcast.net

Thanks so much for your help!

Home Sweet Home...

We are home -- yippie!  Even though our doc was not too excited to let us go as Gavin is still not himself, he still let us go.  Thanks Dr. R!  Gavin is doing much better but his energy levels are way down.  He has been taking very long naps lasting 5 hours and still sleeping up to 14 hours at night.  He is still not sitting up on his own but his belly is also huge, which is probably the cause.  His blood levels are not great and he will probably need to be transfused again next week.

So we are at home.  Although home is the best place to be I was a bit overwhelmed tonight as I was trying to figure out Gavin's medication schedule.  He is running four IV meds one lasting 3 hours, one 2 hours and the last one 1 hour.  Wow.  We will do what we need to do but this is going to be tough.  Please pray Adam and I will find the strength and clarity of mind, especially during the middle of the night, to give Gavin the best chance at staying healthy.  We can do it!

Gavin will be back at duPont on the 13th for his small bowel follow through and we hope to be admitted within the next couple of weeks to begin the Omegaven!  I was told it would be at least a 3 or 4 day stay, which is actually pretty brief compared to places like Boston, but we know that Gavin will be well -- very well monitored.  We never are more than a phone call or email away from our doc.

Thanks for helping us through yet another stay at Hotel duPont!

The Scoop...

Well after telling you all our exciting news yesterday about the Omegaven we had a little scare last night as the FDA had called back questioning why we wanted this drug for Gavin and said they needed to do further review. Well thank God they called last night and gave the final approval! We are so thrilled. We have a few more details to work out like, how it is going to be paid for, and the protocol here at the hospital.

I'm praying everything goes smoothly. People keep reminding me that Gavin will be the first child to use Omegaven for his particular issues and to not get my hopes up -- well my hope are way up already. I just want to see him grow. I know this is not a cure for his illness but I really believe it can at least help a little bit.

As for Gavin cultures -- has had three consecutive positive cultures of the yeast so we need to wait another day and see if we get another negative. If so then we should be able to go home soon! He is still not himself and his liver numbers and way up since bringing him in -- we'll see.

Thanks so much for your prayers.

It's Coming....

It's coming -- Omegaven that is! I am so excited as out Doc came in this morning and said that it looks like we should be able to get that beautiful fish fat soon. This will be life changing for Gavin as we will actually be able to feed him the calories he needs and give him the ability to grow. For those of you who are new to our journey or just forgot -- Gavin is on TPN, which is nutrition fed via an IV in his chest. The TPN is made up of several things like sugar, salt, protein and fat. The typical fat given in called intralipid, which causes liver failure for many children. Gavin's liver is not in great shape but he is not in liver failure, however he has an intolerance to the intalipid due to his hyperinflammitory issues and the MAS. The Omegaven is made up of Omega 3 fatty acids, which has amazing healing properties and is a natural anti-inflammatory agent. We are so excited -- I'll be even more excited when I see that first bottle infusing!

Gavin is doing a little better thins morning. His one bug was identified and he will be switched again to a more effective antibiotic. We are still concerned for the fungus. I think the plan is to wait and see if we still get positive cultures and then determine if the line needs to be pulled -- hopefully not! Fevers are gone but we still have not seen our typical Gavin yet, we'll see how the day goes!

For a better explanation of some of the "Big Words" I just used, click on the links to your right!

Update...

Gavin had a very long night. He is having waves of gastric pain that literally send him into a fit and sadly there really isn't anything we can do for them. The pain is most likely from his poor motility being ever worse due to the infection. Because Gavin continued with fevers yesterday we switched his antibiotic and it seemed to do the trick, as far as bringing down the fever.

His counts all took a huge drop leaving him once again very anemic and with a white count of 1. He seems to be doing a little better but is still not sitting up and is very irritable -- but who can blame him?

On a totally unrelated note -- I officially opened my photography blog today! Please come and say hello www.urbanstudioblog.com.

Thanks for your prayers -- keep them coming!