Back To DuPont...

I got a call this morning from Gavin's doctor letting me know that Gavin's blood work is similar to that of a train wreck -- pretty messy.  His hemoglobin is low, liver numbers are high, blood sugar was 490, calcium is very high and his phosphorus is undetectable.  I knew this was coming as Gavin looks very similar to his blood work -- a mess.  

We are headed back to the hospital early tomorrow morning for blood and more labs.  We most likely will be admitted, though it will be a fight.  Please pray that we can figure out what is causing the downward spiral in Gavin's little body.

Life at home...

Yesterday I was telling Adam about how I wish somehow in my mind I could just resolve that our life will never change, we will always be in and out of the hospital and we will never find quiet.  If I could keep in this mindset it would make my life a lot easier -- I wouldn't be so stressed every time a possible admission is in the air.  Truth is -- I'm not in that mind set.  I still dream of living a normal life, I still have glimpses of my little boy made whole, and no matter how many times we are admitted to the hospital the words "bring him in" still sends chills down my spine.

Things with Gavin are crazy right now -- I feel like his little body is unraveling.  Gavin has been running fevers for the past 48 hours, cultures were drawn and so we wait.  The biggest issue right now is his blood sugar.  The past few nights he has been running over 500 when on his TPN.  You read that right -- five freakin' hundred.  If things do not calm down we will have to have an endocrinology/diabetes work up later this week.  

He still is struggling with his energy levels.  Sometimes he does ok and is pretty alert but other times I have to do that look real close is he still breathing maneuver.  He is getting better and does seem to be making progress everyday.   He still is not peeing, which in mind mind is one of the biggest issues I would like to see resolved.

For this week please pray that we can get Gavin's blood sugars under control and try to figure out how he can go from one extreme (hypoglycemia) to the other.  

This boy likes to keep things busy!

Quick Update...

Gavin is doing better!  He has had his eyes open and is communicating with us a bit!  Also, we help his TPN last night and just ran his fluids at a low rate, which seems to have allowed his body to get rid of some of the extra fluid.  I think we are going to be able to stay home with maybe just an outpatient transfusion.

Thanks!

Home...

We are home.  Although I'm very happy to be here and missed Adam and Madison so much, things are still very stressful.  Gavin is not making very much progress.  He is so swollen and has not been able to handle the TPN infusion and becomes very fluid overloaded.  The issue is with his Albumin a protein found in blood that helps fluid stay in the vessels and not leak out into the tissues.  For some reason Gavin is not making Albumin and the Albumin transfusions he has gotten do not last long.  There is a chance we will have to take him back into the hospital in the next 24 hours to try to get his fluid levels back in balance.  

He did wake up for a bit this morning while we were at the YMCA at Madison's gym class.  He wakes up, but is just not really all there.  The MRI yesterday showed some brain atrophy, which is so be expected considering his condition and doesn't really explain his current state.  If things don't improve this week we will meet with the neurologist.  

These photos from the week before his surgery and are so sweet -- and they give me hope that we will soon see that little boy again!

Another Flashback...

Another Flashback... from Adam & Karen Owens on Vimeo.

Reading this in an email? Click here to watch movie.

Flashback...

Flashback... from Adam & Karen Owens on Vimeo.

Reading this in an email? Click here to watch movie.

Open and Shut...

Open and shut -- that's what happened over night. Last night around 7pm after his dose of Morphine and Benadryl Gavin woke up. He was scheduled for an unsedated MRI at 8, which was not able to be done because he was literally completely awake. A few hours prior to waking up Gavin was looking so bad and the docs were fearing that he may be overdosing on Morphine, so the morphine was stopped after his 7pm dose. This theory has gone to the dogs as he actually woke up after his Morphine was given. None the less a tox-screen was done to check the levels but wil not be back for several days. Oh my gosh -- my baby is getting drug screens at the age of 2.

The bad news -- Gavin is in his trance like state again. This morning I took him out for a walk and after about 10 minutes he went limp again. The other very concerning thing is that after 15 hours of no Morphine in his body he is showing no signs of withdraw, where prior he was going into severe withdraw after 5 hours or so -- this points to a possible neuro issue. We are hoping not. The original theory was his mito issues causing the extreme fatigue -- this is my bet, and hope. He will be going down for a sedated MRI at 1 and please pray the scan is clear.

Gavin received lasix yesterday but is still very swollen this morning and not making much urine. And just in case you were wondering -- he is still not peeing on his own. We also restarted the Omegaven, which has been going great. He seems to be putting on some weight thanks to the extra calories the friendly fish are providing. There is a possibility of discharge later this evening if the MRI is clear -- my hopes are not high, but it has been mentioned.

This morning I woke up with a new sense of strength -- or I should say I feel like I'm crawling this morning rather than flat on my face -- improvement none the less. Thanks so much for the support you all are providing our family.

Positive Culture...

Gavin's blood cultures are positive -- and that's great news because the bacteria is not from his gut! It's the same bacteria that was growing in both his fem lines so most likely when the fem was pulled the bacteria then went to the new line. This is actually good news -- something treatable and also an answer.

Gavin is still "asleep." The clarify -- he is not in a coma, just in a trance like state. We will be going down for an MRI this afternoon to be sure nothing neurological is going on. Gavin is getting more albumin this morning followed by more lasix. His one eye is completely swollen shut and his body is very puffy.

Thanks for your prayers and positive comments!

Fear...

There are so many things that I am fearing today. In an effort to get them off my chest I'd figure I'd tell you all about them...

One is that Gavin will never "wake up." For those who do not know, ever since Gavin's surgery to remove his large and small intestine as well as his gallbladder, he has not been the same. He is in a sleepy, floppy and withdrawn state for much of the day. Today was particularly bad -- he slept for 24 hours -- and he is still asleep. At this point we are naming the Mito as the culprit -- his body's energy stores are completly depleted leaving him totally drained.

I fear Gavin will never pee again on his own, forcing me his mother to invade his last area not taken over by tubes. I hate that I know that in four hours I'm going to cause Gavin pain -- breaks my heart. I'm mad that we can't leave the foley cath in due to his high infection risk.

I fear that the surgery was unsuccessful. This fear has no basis as cultures are still negative. The only way we could say that the surgery did not work is if Gavin starts to have cycles of sepsis due to bowel bugs, which he has been clear of for over a month now.

I fear that I will not be able to keep this up -- I'm getting tired and there are days I pray for a "new job."

With all these fears -- somehow I'm still looking to the One who conquers all fear. Although my words sound lost at times, deep in my heart I know we have not been forgotten, and though we may feel this life sucks, Adam and I both trust that there is a greater purpose in all of this chaos.

As for Gavin -- He is a swollen little boy. His eyes, from which I can tell, are almost totally swollen shut. His counts have all drastically dropped and he received some albumin this morning in an effort to pull the fulid out of his tissues and back into his vessels. We are running lasix now and I convinced them to place a foley for a few hours to let his pee drain freely. Ever since the antibiotics began Gavin's fever broke. What caused the fever and the drop in blood counts?

We don't know.

Loss For Words...

Tonight Gavin was admitted to duPont with fever. He is really out of it and not really responding to much -- just is so sad to watch. I really can't believe this. I feel like I am living a nightmare -- we are really back here. I'm trying to watch what I type as my emotions are all over the place right now. I'm very angry, not sure who at but I'm trying to hold back my screams.

In all honesty I have to ask what the heck God is thinking. Come on. Really? This sucks.

Just don't have much else to say.

Home...

Gavin and I finally made it home late last night after a long day of tying up loose ends.  This morning I am feeling a level of exhaustion and stress like I've never felt before.  So many nice people post on this blog and leave me comments saying just how "strong" I am and how I handle this "so well," -- well let me tell you -- I'm completely overwhelmed, stressed out and tired beyond belief.

I keep waiting for Gavin to turn to corner and show me that the "old Gavi" is still in there -- I'm loosing my patience.  He is making progress but I'm just so used to his bounce back in three day approach!  His peeing issue is down right frustrating.  I have fears that his bladder will never return, which just makes me sick to my stomach.  Then there's the medical supplies -- they are pouring out of every square inch of our living space.  The neat/organization freak in me is crying out for mercy!

To end on a good note -- I'm getting ready to cook my wonderful husband and little girl a nice meal. 

So normal -- and it feels so good.  

Wednesday Morning...

The discharge word is being thrown around the air today -- we'll see if our team can work their magic. We have, what feels like, a bajillion loose ends to tie, so I'm not packing just yet. Today is a very scary day -- all antibiotics and antifungals have been stopped. Oh my goodness. Gavin's counts dropped again overnight so we are waiting on the blood bank to get his blood ready and hopefully we will start the transfusion in the next few hours.

Please pray for all these little nagging issues we still are trying to figure out, including where we can get our little junkies narcotics, ostomy supplies, coordinating things with our TPN pharmacy, catheter supplies, figuring out how we are getting the Omegaven and where its tubing and stuff will come from, how we are going to get Gavin to bend in his car seat for the hour and a half drive home and lastly our transition into the real world!

Tuesday Update...

Today we started Gavin on rectal morphine and rectal Valium, which is one step closer to home. He seems to be doing fairly well on the transition although he did need one breakthrough of the morphine. The cathing has been going well -- not sure that's really possible, but we are making the best out of the situation.

Our friends Alex and Lauren are inpatient with us so Madison got to hang out with her main man and I was able to have some girl talk with another mom. Adam got off work early, which was helpful in the afternoon.

Since pulling the fem line Gavin's fevers are gone and in fact he has been his typical ice cold all day! Not only did his temps go down but his retching is not as bad as it has been this past week --- can you say infected line? I don't care what those cultures said! Gavin's counts have dropped significantly over the past few days so we will most likely see an transfusion tomorrow.

You all are wonderful! Today I was reminded just how blessed Adam and I are. Thanks for carrying our family along!

I Did It...

I got through my first straight catheriztion. Phew -- so glad that's over. Now I just have to do it again in three hours.

**sigh

Thanks to our pal/nurse for helping us learn our newest skill.

Monday Update...

It's Monday and we are not going home. Oh well, I've given up on expecting discharge and I'm just letting it surprise me! Today Gavin went down to the OR to have his new central line placed back in his chest. Everything went great. I was sad to see his bare little chest go but I know that this means we are one step closer the H-O-M-E. On the plan for the rest of today is to pull the foley cath and begin the straight caths in 4 hours. If I had it my way I'd keep that foley until we were walking out the door to spare Gavi and his poor little pee-pee from the trauma, but I we don't have a choice. We also will be restarting the Omegaven in a few hours -- yippie!

Tomorrow we will transition Gavin over the rectal Valium and rectal morphine and see if this eases his symptoms of withdraw -- if so then we will go home with these. The drugs are the only thing keeping us here at this point. The doc did throw around a day for discharge but I'm not even going to say it.

Sunday Update...

Not much new going on around here this weekend. Today we pulled Gavin's Foley and he did manage to pee a small amount around hour 7 but wasn't enough to ensure that he would not have to be cathed again throughout the night. At least we know he his bladder function is coming back.

He has still been running temps so I'm not sure what this means for going down to the OR tomorrow. This morning we were finally able to get a culture on one of his lines, which was previously not giving back any blood. So we'll see if that lumen sheds any light on where these fevers are coming from.

The Omegaven was held all weekend, which was a total bummer. We however now know that the Omegaven was not the cause of the fevers! yippie! We should start back up on Monday. Thanks for all the tips from all you other Omegaven families.

Frustrations...

We have had a crazy frustrating day. We started this morning with a major lab error which sent everyone panicking of Gavin's platelets being 17. They were not 17 but with starting the Omegaven it gave us all a scare. We had an OR time of 10:00 which was bumped to 2:00. Around noon Gavin decided to spike a fever. Great. Dr. Katz came in at 4:00 and said we are not able to place the line due the possible infection.

To make matters even more frustrating we are fearing Gavin is having a reaction to the Omegaven -- with the fevers. One of the reasons for Gavin not being able to tolerate the intralipid is due to the high fevers it caused. In this case we are actually praying for a line infection and not a bad reaction to the Omegaven. Also Gavin's triglycerides are very high this morning and is they are higher tomorrow we will need to take a break from the fat. Gavin always had had difficulty processing the fat in his TPN, in fact we had an episode last year where Gavin's blood was light pink and his triglycerides were 3000 --- yikes! His levels are no where near that but it shows what a crazy guy Gavin tends to be. We are also removing the Foley tomorrow morning and we begin strait caths every 4 hours. -- Oh gosh.

So here I sit at 5:00 and I'm rather bummed over today's events. We are getting ready to start another very long weekend and I'm wondering how in the world we are going to stay sane until monday.

It could be worse.

Hello Omegaven...

It's here and it's infusing! So far Gavin has begun the Omegaven with no issues and we are looking forward to seeing our little boy grow thanks to the much needed calories the new fish fat can provide. Other that the Omegaven it's been a rather quiet day. The foley is back in and Gavin is more comfortable. His withdrawal is about the same. We are looking into some rectal forms of both Valium and the Dilaudid so that the narcotics do not keep us here.

Dare I say we have a tentative discharge of Monday -- I'm not getting my hopes up, but it's just kinda nice to think about it. :)

Omegaven -- hello. from Adam & Karen Owens on Vimeo.

If you are reading this post via a reader or email click here to see video.

Wednesday Happenings...

Today was quite a day. I was all geared up for the Omegaven to begin early this morning but had to be posponed untill tomorrow due to a typo in the protocol write up. Things should be a go for tomorrow morning, but I'm holding off on the excitment untill I see it being hung on the pole.

We attempted to remove Gavin's Foley catheter but had no luck. I have to admit that this makes me very sad. I'm just not ready to think about another issue Gavin may have to deal with. We had a consult with urology today who recommended placing the foley back in and waiting until after Gavin's gets his line on Friday to remove it again. At that point it looks like Adam and I will need to strait cath Gavin's every four hours at home until his bladder recovers -- if it recovers. I am really praying that this issues will resolve over time. The urologist mention some decisions that may need to be made down the road if this continues -- all of which make me want to vomit.

Deep breath.

Please continue to pray for Gavin's recovery. He is making progress but it is so stinkin' slow. His body is so deconditioned that everything seems so difficult for him to accomplish. Enjoy the new photos -- and yes his little shoes are way too big, but so freakin' cute!

Tuesday Update...

Change of plans -- Gavin will not be able to get his broviac CVL until Thursday or Friday. Needless to say I'm so bummed but at the same time I'm trying to relax and trust the team to do what is best for Gavin. Gavin is still struggling. We are all sitting on the edge of our seats just waiting for the real Gavin to return. It is so hard to watch the blank stare in his eyes.

The exciting news is that Gavin will be staring the Omegaven tomorrow! Dr. Raab handed me the 6 page release this afternoon and although most of it sounds a bit scary -- it made me very excited for the promises this holds. Tomorrow will be a exciting day!

Please keep Madison in your prayers as she is really having a hard time -- acting out and just really out of sorts. It's so hard for her to be here for an extended time. Pray that Adam and I are able to give her what she needs and that God will fill in the rest.

Monday Update...

I was able to get Gavin into his wheelchair today and we took a short stroll around the hospital. I'm not sure if he actually enjoyed it or not -- I know he certainly did not enjoy the actual act of placing him in his chair, even with the seat all the way back. He is very stiff and does not like to bend his abdomen at all. Gavin is still not himself. He had a rough night with lots of retching and moaning.

The positives are that we have weaned him off the Dilaudid pump and he is now on PRN doses. He seems to be doing pretty well with the wean. We have plans to go down to the OR tomorrow to place the broviac and then 48 hours later all antibiotics will stop. VERY SCARY -- for all involved.

The Omegaven should begin later this week, for those who asked.

Thanks as always for your continued support!

Sunday Update...

I really have nothing to report today. We are continuing to try to wean Gavin off the narcotics, but it has been difficult. We are seeing that as we wean down his continuous rate he is needing more PRN does of the Dilaudid -- not sure if this is progress or not. Gavin had a pretty off day. Yesterday he seemed to be more playful but today he was just kinda quiet and in his own world. Truth is -- we have not seen the old Gavin yet, which has me worried, but I'm sure his little body just needs time to regain strength. He still has not tried to sit up and he is not a fan off having to bend his abdomen -- these are things we will need to work on.

We are so glad this weekend is over. Thanks to all who stopped by for a visit -- it really made the time go by a little faster.

Saturday Morning Update...

I'm proud to say that it looks like the "corner" has been turned! It's like a switch went on in Gavin's little body finally reminding it "oh, ya -- this is how I'm supposed to function." His pain is almost at a zero, though it's hard to tell since he is seriously dopped up. His symptoms of withdraw are still very intense and are making him so jittery and sweaty, I'll be requesting to go up on the Colonodine patch today and hopefully that will help him.

The things left to accomplish are as follows:

Wean down Narcotics.

Take out Foley catheter -- and see the river flow.

Remain fever free.

Have negative blood cultures.

Begin Omegaven and monitor labs for 4 days.

Pack our bags and run towards the door like our bottoms were set on fire.

Narcotics...

We hate them.

I know it's a strong word but I strongly feel a dislike towards them. It is a proven fact that children with Mitochondrial Disorders often times respond in a very weird ways to narcotics -- we now know that Gavin is one of those children. We placed Gavin on a Clonidine patch yesterday to help with the withdraw symptoms of the dilaudid -- it has done wonders! Last night Gavin was actually able to be semi-pain free and interact with me and others. It was a gift from God -- and to top things off he had some crazy silly reactions that gave me a few smiles.

Gavin spiked another fever last night -- go figure. The original plan was to place a broviac line today but we were not able to due to the spike and now the positive cultures. So this morning we placed another femoral line and will have to wait and try to get his temps down and negative cultures before we can place the line in his chest.

So -- things look like they are improving. Thank you God for giving Gavin the break he needs!

Day 10 Post-Op...

Gavin Day 10 Post-Op from Adam & Karen Owens on Vimeo.

Thursday Update...

Where to begin? It been a rough past few days. Gavin is just a mess. There are so many issues playing into the overall problems that it is just so overwhelming trying to sort through it all. The biggest task at hand is to try and help Gavin get off these narcotics. He still is in a lot of pain but he is not handling the narcotics well and they seem to be causing more harm than good. We will start Gavin on a patch to help lessen the withdraw symptoms. Despite that fact that he have not yet started to wean him down on his meds he is already is pretty serious withdraw due to his tolerance build up. He wakes up shaking and in a panic and is sweating profusely. It's very sad to watch and add in the very real pain he is still experiencing and it's just almost to much to watch.

We have had a negative culture from the infected femoral line so we plan to head to the OR tomorrow to have him broviac placed back in. I don't' think anyone has any long term plans, we are just taking one day at a time.

I'm just about done with this place. I've just reached my limit. It's one thing to be stuck here in general but another to be stuck here and standing over your hurting child 24/7, not to mention trying your hardest to give Madison to attention and affection she needs and deserves.

Please pray that this patch works to lessens to horrible withdraw symptoms Gavin is having and also pray that we will find his pain to be less once we wean him down off the narcotics.

Positive Cultures...

Late last night Gavin's blood cultures from yesterday morning grew out. Because of the fact that Gavin is on so many antibiotics and still grew bacteria we had to pack up and move to an isolation room. I don't mind the private room -- it's just the part where we had to pack up our life at 10:oo at night.

Gavin's Foley catheter was put back in last night after he went 8 hours with no urine -- at this point I think it is just going to stay in until we get him weaned of some of the narcotics.

A new femoral line might be in the plan today, I'm not real sure.

Tuesday Afternoon...

Things are rather frustrating around here. Gavin continues to be in pain and it seems to be getting worse. We did an ultrasound this morning and it did show that both his liver and spleen have enlarged since last week, but not real convinced that it what is causing all this. He also spiked a fever this afternoon over 103, cultures were drawn again -- just like everyday, so we'll see.

I'm just getting tired of watching him like this. It's just not fair for any of us. I know everyone is trying hard but it just seems like nothing is working.

We also have attempted to remove the foley cathater again a few hours ago -- still no urine but we are giving it 4 to 6 hours. With the amount of fluid he is getting he should be putting out around 50 to 75ml's an hour. If we don't see this the catheter goes back in.

Poor little guy.

Monday Evening...

It's been a long day. Maybe Gavin's doing a tiny bit better-- but I just don't know. Everyone put their minds together today to try to figure out why Gavin is still is so much pain. The conclusion is that we think it's a few things combined -- inflammation, phantom pain, anxiety and maybe a few other things. We went up on his pain meds so we'll it he finds relief. Gavin is still running temps, though they are slowly coming down. He has been running a little over 101 all day but nothing higher.

Right now he has been sleeping for a few hours and I pray he wakes up a "new and improved" Gavin.

Monday Morning...

It's been a difficult past few days -- It's like we are back a square one. Despite the catheter and the urine flowing freely Gavi is still in so much pain. I guess the plan today is to try and figure things out. What is going on -- if anything.

Adam and Madison went home yesterday to get the mail and Madison was thrilled to find a few packages on our doorstep. Thank to those who sent the kids gifts -- Madison felt so special!

Hopefully this evening I'll have more to share -- right now please pray Gavin can find comfort.

Sunday Evening Update...

Oh what a day -- a very long day I do not want to repeat. This afternoon Gavin's pain became very severe. No amount of narcotics was taking the edge off so the docs ordered a stat CT scan of his belly. The answer was clear -- Gavin needs to pee. They said his bladder was so enlarged that it was filled a good portion of his abdomen. They replaced the Foley catheter and he has found some relief. So now we will let the Foley in place for another few days and then try again.

Now for a question for all of my Ostomy mothers: What do you find to be the best type of bag? The bag he has on now is way too small for his amount of output, but the larger sizes are too big to fit under his G-tube stoma. Anything you wish you had known when your child first got their ostomy? Gavin's is a jejunostomy, so it's a different than the typical ostomy -- but I think it's the same concept.

Home Sweet Home...

Well not really -- maybe I should say home sweet home away from home. Anyway, we are out of the ICU and back on the regular pediatric floor. This is a great step towards getting home, not to mention we are so happy to see out 3E family again. You all mean so much to us and have helped us through so many hard times -- we are glad to be back.

Yesterday evening was wonderful for Gavin -- early this morning has not been so good. It seems like he took a huge step backwards as far as his pain. He is still running a fever which is still a cause for concern. Gavin's underlying issues make this so difficult because children with Mito just do things differently, their bodies extreme reposes to the most simplest changes. This may be the case with Gavin but we just can't rule out infection considering his history. It looks to me like his liver and spleen are becoming more enlarged, which could be the be the cause of the increased pain plus the j-junostomy is putting out a fair amount of blood.

We are going to tweak a few things to try to figure out the cause of pain and also the cause of fever. We need to be fever free to get a new central line so let pray we can figure this all out soon!