Monday, December 31, 2012

Nice day

All is well here. The x-ray turned out boring, I like it! It sure is nice to have dad here. He is a big help. I was impressed he posted on here :) Cameron moved his legs today & wiggled his feet. He even watched some Go Diego Go movies ♥ He was a really good sport all day with his numbers once we found the happy balance. I heard the phrase again "Maintenance phase of ECMO" our nurses tonight are really great too. The ECMO nurse Eileen is super sweet & Shannon is fun too. Cameron is doing really well getting the gookies out. Overall, it was a good day today. Cameron is getting a little stronger by the day with his movements. Not moving for such a long time really takes it's toll on his muscles. I love to see him get stronger ♥ Thank you for the prayers!! It's working ♥

Good tricks

It looks like the bag of tricks worked for the noon re-evaluation. He seems to be leveling out again. Yayy! The fluid balance is a big player in the game of getting his lungs happy. Too much fluid & his lungs get grumpy, too little fluid & his whole body gets grumpy. It is a constant balancing act. I love it when the tricks work. Thank you for the prayers, they are working too. By the time we all get through this we may all have a honorary degree in medicine ♥

Sunday, December 30, 2012

Nice day

He has had a fairly quiet day. Little waves but things are good, just more tweeking of the settings. I have had a wonderful 40th birthday here. Thank you to my husband, Laura, Mom, Aunt Kiss, Kayleen, Kelsey, Auntie T & family, Uncle Pete, Grandma & Grandpa Merrill & my super sweet nurses & doctors and of course Cameron for a nice peaceful day full of peace & treats! Bring on the evening rounds! Thank you for your prayers ♥

Nice night

We had a nice quiet night. Little ripples but no waves. Now, we just wait for the x-ray to make sure he is tolerating the tweeking of settings. He is on a constant flow of breathing treatment medicine to open up those little lungs. They are still moving the gookies out too. Baby steps ♥ Just waiting for rounds, the morning rounds seem to draw a bigger crowd of smart people. I heard a rumor we are on the "maintenance phase" of ECMO now that we are on this version of ventilator. Slow & steady, Thank you for the prayers ♥

Saturday, December 29, 2012

Love easy

Easy rounds tonight ♥ nothing exciting to report. There are some numbers that are going in a good direction but we won't know what it means, if it's Cameron doing it or the machines. My vote is with Cameron ♥ Cameron is sleeping really well & getting lots of rest. He is so tolerant, when it's time to turn him he nods his head to tell us when he is comfortable. There were just a few ripples today adjusting to the ventilator. The ultrasound on his leg came back great, no blood clot when they removed his iv. Whew! That is a win!!! I think I shocked his doctor tonight when I told him about "Cameron Merrill's Big Fight" and all of you praying for him. Thank you sooooo much for all of the prayers love & support! Prayers for a peaceful night and a happy morning x-ray ♥ Thank you for your prayers ♥

Quiet night

We had a fairly quiet night, little ripples but quiet. Now, we are just waiting for the rounds to see how the x-ray looks. It is so nice to be able to tell when he is sleeping. He knows that his chest is really sick & that he needs lots of rest to get strong. He knows he is a very good boy and very strong too. He knows his special tube in his mouth helps him breathe & when he gets better it can come out & he can talk again. Until it's time for it to come out, we just have to nod our heads. He nodded that he is ok with that. He is stronger than I will ever be. I just love that sweet little guy. Prayers the x-ray goes well & we can stay on this ventilator & ECMO combo. Thank you ♥

Friday, December 28, 2012

Happy mom

So far, he is doing really well tolerating everything. We will see in the morning x-ray if he is tolerating completely. We had a long talk about all of the fun things to look forward too. He & I talked about his birthday party in September when he turns 3 and all of the fun things we will do at it. Maybe we will have 5000 of his closest friends come!! I walked by his crib when I thought he was sleeping only to see him squinting his eyes. I asked him "Are you smiling at me...he nodded yes!!" Awww that made my mommy heart melt into a puddle. He is still little silly, happy Cameron in there under all of that tape & tubes. It makes him happy to listen to his Diego movie. I have a feeling I am going to be hearing a lot of Diego in my future. I am not sure what the future brings with him, but I can love him today, and that's the BEST!! Thank you for all of the prayers, every prayer counts & it's working!!! ♥

He did ok

They did the switch to the regular ventilator. They repositioned the canulas in his neck & sutured them, recalibrated the ECMO machine. They put a bunch of albuterol in the ventilator and it seems to be helping. We don't know if that is Cameron or the machine. There are so many variables. So far, he seems to be tolerating all of the adjustments. 24hours will really be the test. They said it is not bad if he has to go back on the other ventilator but we just have to do what he tolerates best. That was a big morning ♥ Thank you for the prayers ♥

Thursday, December 27, 2012

Rest settings

Some good news is that he finally stopped leaking :) The doctors did rounds a little early. They are turning down his ventilator(Ocilator) to "rest" settings again. Now, we just cruise like this for a while & hope the lungs do their very best to heal. They won't push them anymore, just rest. The next time they have to change a filter on the machine, they will do the super scary test again. This last filter lasted 12 days. Thank you for all of the love, encouragement & prayers ♥ Please pray for those little, lungs to heal ♥

Big day

Today is going to be a big day. Ugh, big is good but scary. They are going to lighten up his meds, bag breathe for him to test his compliance on his lungs. If all goes well they will switch him to the regular ventilator. The scary part is all of the heprin he is on and any slight bump or unhappy pressure inside his lungs he could have a bleed. He needs to make steps but, it is scary to try new things. Due to possible ucky side effects or complications to all of the medicines he currently on, he is eligible for the leap to a new machine they said. Now we just wait to see what this doctor's opinion of his lungs are. The other doctor who tested them previously is off now. It will be interesting to see this doctor's opinion of them. Big change needs big prayers please ♥ Thank you ♥

Wednesday, December 26, 2012


There is never a dull moment around here ♥ Tonight at rounds they said to turn down the settings some more. If he tolerates the lower settings, in the morning sometime, try him on the regular ventilator on low settings. The good news is with that one he will be able to nod yes or no again!!!!!! Go Cameron go!!!! Thank you for the prayers ♥

More info

We got one answer that may explain yesterday's scare. At 3am they did their routine blood cultures since he can't get a fever on this ECMO(It warm's & cool's his blood) It was positive for bacteria in his bloodstream. Since he has all of these Iv's and he is leaking still, it is very common to have this. Just the bacteria on his own skin can do this. The good news is they put him on antibiotics during the scare & they will most likely get to the bacteria. They will have more info on it tomorrow to target it specifically. He is still pretty fragile but better than he was yesterday evening. Thank you for your prayers ♥

no answers

He is one complicated kido. He is still having low saturations & increased medicine needs. There are no answers & that makes it tough. You can't fix what you don't know. The only option is to support him through this with the technology we do have and pray that it is enough. Thank you for the prayers.

Tuesday, December 25, 2012

ok no more waves tonight

They are still trying to figure out why he has the lower saturations & issues. He is stable at the low ones, but it is a mystery. They said sometimes the body just has a response to all of the intrusion. They said they may never know. He is on every medicine to help such things but, things still happen even with the best of interventions. Not knowing what set him off, makes it impossible to prevent it again. The faster he heals the better!! He needs some prayers & good luck too!! No more waves tonight! Thank you!


He is leveling out, kind of. He is slowing his need for more volumes of medicines & fluids. They are not sure where it is all going, but there is no obvious answer. It is going to be a busy night. His oxygen saturation numbers are hanging out low but steady. Now just watch & wait & pray. Thank you.

Merry Christmas!

Merry Christmas!!! Santa came by overnight & brought Cameron his stocking & treats this morning. He was a good boy this year, he was on the nice list! Santa will come by again today for a picture and more treats. His night was mellow. He is still leaking a small amount steadily. They say it will stop in a few days, eventually. Until then... They did rounds on us first thing this morning, but it was a good thing for once. Usually I get nervous when we are the first, but it was great! The x-ray looks good so they will go down on the settings a tiny bit. :) Love it!! They have to switch a filter on his ECMO today, (par for the course) so during that, they will do another bag breathing check to see if his lungs feel anymore "Stretchy". I am nervous about the filter change but excited to hear "they are not terrible" again ♥ It is so weird, the crazy things I celebrate now ♥ Merry Christmas & thank you to everyone that made our Christmas a lot easier, with gifts/cards or kind words, prayers, positive thoughts....all of it. Thank you for helping!! I want you to have a wonderful relaxing Christmas day, you deserve it ♥ ♥ ♥

Monday, December 24, 2012

Merry Christmas

The doctors rounds were easy tonight. He is getting some more platelets right now to help him form a good clot. I think there are 9 kids in the PICU tonight. I met a really nice family. I am praying for their son & they are praying for Cameron too. I miss my family. This was pretty hard, but where I need to be. Soon enough this will be behind us and Cameron will be home running a-muck again. Just a bump in the road, in the big picture. They are serving a Christmas lunch at noon. I had better go to sleep if I want Santa to come by tonight. Prayers for a peaceful night please ♥ Thank you for the prayers ♥ Merry Christmas ♥

Better is always good

He is still leaking but they are able to keep on top of it. It is more of just one more factor now, instead of a big issue. I think that counts as one big wave today. Now that things are settling out I can relax a little more. Our day just got a lot better, whew. My Christmas wish is for Cameron to beat this and....a nice clot too. If someone had told me a year ago, what I would be wishing for this Christmas, I would have said they were crazy. Thank you for the prayers! It's working! ♥ Have a wonderful Christmas Eve ♥


It is slowing down but still going. They say a steady little/medium amount is tolerable. The circuit can keep up with that. I keep telling myself, someday this will all be a memory & each day is one day closer to home, these mental pictures will fade or go away someday. A week ago today we started this ECMO, so I am just fine with a steady "leak" at least he is still here & this "leak" is fixable. Thank you for the balloon launch in Cameron's honor. He loves balloons! ♥ Thank you for the prayers! Thank you Grandma Merrill for dinner too! ♥

If it's not one thing....

They said one of the risks with being on all of this heparin & having a very prolonged clotting time, is having bleeding issues. When they suctioned his mouth today like they always do, they had some bleeding. A little is usual, medium is worth watching and large amounts they have to try new strategies. Right now we are at medium. Not great & one more thing to watch but it's not terrible yet, since he gets new blood in the ECMO circuit every day. It goes with the territory, but not exactly nice for mom to see. It is not a big issue yet, just another hurdle. Prayers for clots that stay intact. Thank you

Just ripples

It has been pretty quiet, ripples overnight. His oxygen saturations fluctuate or go down & I wake up. The nurse settles down the mama bear with "it's ok, it's on the way back up" and she is right. It's that feeling of waking up to pounce or jump into action, but there is nothing to pounce on & no action I can do to make it better. My asleep brain hasn't gotten that memo. My awake brain totally "get's it", my asleep brain needs to catch up. Overall the numbers say he is tolerating the lower settings. We will see what this morning's x-ray brings. I won't know until they do rounds at around 9ish am. Merry Christmas Eve!!!! ♥ Thank you for the prayers ♥

Sunday, December 23, 2012

Baby steps!

They just did the manual bag breathing test the doctors words were "It's not terrible, it is not as bad as the other doctor had described them" and then he turned down some settings(in a good way) I will count that as a win! Now, we watch the numbers to make sure he tolerates these lower settings. So far, so good. With the lungs & their healing, there won't be anything drastic day to day, but in a few weeks we should be in a much better place & re-evaluting ECMO stuff. They always tell me this is going to be a long road, no specifics. More answers & better guesses to when we go home will come with time. Right now, the "Ballpark" guess & only a guess is February/March-ish between ECMO & therapy afterwards. When he gets done with the ECMO he will be basically like a newborn again, since he hasn't used his muscles in such a long time. There will be lots of physical therapy. They say kids are really resilient & bounce back well. He is very tough & feisty too. It really is a good thing. So much can change from day to day it's really hard to do a ballpark guess. Thank you for the prayers! Every prayer counts ♥

Doing good

He's doing good. The rounds with the mob of doctors was pretty uneventful. Hopefully, we are sliding into a comfortable routine. The doctor said today, they would every so often do a little test on his lungs. They do this to check on his lungs to see if they are any more compliant. To do this test, they manually use a special bag that looks like a teal colored balloon(kind of) it hooks up to his intubation tube. Then, they squeeze the bag & manually breathe for him. They go by feel to see if the lungs are more "stretchy" and watch the numbers as they do it to see if he tolerates it. When his lungs are "stretchy" enough & compliant they may switch him to a regular ventilator again, but on rest settings. They didn't say what time they would do it, just sometime today. Prayers please so the bag breathing test goes well & for a quiet day ♥ Thank you!

Saturday, December 22, 2012

Quick & easy

The rounds from the doctors tonight were quick & easy. I am a big fan of that. Let's keep that up. Every night they change his dressings where the canula's(big tubes) go into his neck. I hold my breath each time since he is on so much heparin to thin his blood so it doesn't clot in the ECMO lung bypass machine. He did well with the change. It is amazing the things that go on outside of our door to our little room. I don't need TV I can just lean out my door & watch a trauma show. It really looks just like it does on TV. There is a big turn over of patients here. There is always some stretcher or bed rolling by our room with something that is colorful. I try not to look but sometimes I can't help myself. I admire the people who can do this job & see this every day. It takes special kind of person. Thank you again for the prayers today!! They are working!!! ♥

Friday, December 21, 2012

Nice & quiet

He is still holding steady. I am happy to report. Please pray for another night of peace & healing. I am learning so much here. I have met some really great, strong people here. Seriously, one mom I met is the most upbeat and sweet person & she has a "Mama Bear" in her too. I instantly love her ♥ There are so many inspirational people I have met in my Doernbecher experience here with strength that makes me look whimpy. I try to soak it up :) I am thankful to have met so many great people to learn from & guide us through this. I am amazed at the amount & love from people we don't know, but are now part of our family & this crazy adventure. Thank you so much for all of the prayers, love & support ♥ Big giant hugs to you ♥

Doing ok

The doctors said "We are happy with where he is at, as long as he doesn't backslide, we are happy". I was asking questions to the ECMO nurse(there is always 1 nurse dedicated to Cameron & 1 to the ECMO machine) She mentioned that some kidos kidneys want to stop working on these machines. They are VERY happy Cameron's is tolerating it really well. He is not one of those kids. She also said they can always add a filter to the machine & turn it into a kidney & lung machine. It would be very similar to dialysis. I was told, he is stable on ECMO which is an unstable process all by itself, but any kind of stable is good to me. They said he is getting stronger & tolerating turns & care much better. They have to turn him every 2 hours, which is tricky since he is on tons of heparin, that medicine thins his blood so he doesn't clot the machine. This can also cause major bleeding issues too. It is all about balancing his need for heparin & keeping him from having a big issue with it. Seeing how all of this donated blood is used, makes me want to donate blood a TON more. Ok, so prayers for slow & steady today. Thank you for all of the prayers & positive thoughts ♥

Ripples or waves

His heart rate is up a little, saturations down a little. They are not sure what to make of it.  It may just be part of riding the waves of this adventure.  Sometimes it will be ripples & others are waves. Right now we are riding it out to see which one it will be. Trying to be patient is the hard part. If we pounce on every change it's called "chasing the numbers". Sometimes using interventions to get perfect numbers can cause more trouble than the ripple was, all by it's self if we just rode it out.  Sometimes I just wish there was a fast-forward button to see if I was supposed to worry or not :)  Apparently I will be learning a lot about patience here  <3  Thank you for the prayers <3

Thursday, December 20, 2012


The rounds by the doctors were uneventful tonight. I am a big fan of that ♥ He got a little crazy for a minute (low saturations) but thanks to nurse Toni, now he is back on track. Thank you Toni! It was his only time doing that today. Please pray for a peaceful night for him too. He has earned it after a nice, peaceful day. Thank you for the prayers ♥

Huge gift

The nurses just said he is at a very level place right now. The child life(in charge of keeping kids happy) lady informed me that Santa will be coming by to visit Cameron on Christmas if we thought it was ok. I was thrilled to hear they think he may be around for Christmas!!!!! That was a gift right there!!! Every day we have with him is a huge gift ♥

He is still here

The doctors just did rounds & the said things were unchanged from overnight. Overall, kidneys & liver are still happy with all of the medicines and interventions. That is good to hear they are keeping up. His x-ray looked a teeny-tiny bit better....I will take it as good news. Every time they lighten up his sleepy/hold still medicines on the "Drug Holiday" he responds appropriately. He is still very weak, but may be a little better in that department too. I am pretty sure the doctors are spending a lot of time obsessing about him too. I love it when they say these numbers just aren't matching up, because it leaves a tiny bit more room for hope. They have said there are a lot of questions, just not a lot of answers just yet. Time will tell. Hey, whatever you are doing prayers, white light, positive thoughts/ju ju it is working.....I just can't thank you enough!! ♥ Keep it up please & a big hug to you ♥

Wednesday, December 19, 2012

He needs strength

He is just really weak, any stimulation, like lifting his arm makes his numbers go down & 15 to 20 min to recover. More strength is what he needs. Thank you for the prayers.

Settled down

Now that the "dust" has settled, they switched him over to a smaller ventilator. It is the same kind, just the lower power baby version. His pupils are still equal & reactive. That is a good sign. There are many pieces to the puzzle but at least that one fits. They can't/won't wake him up enough to ask him if he can move his arm ect. His lungs are majorly damaged they say and only time will tell what he will be able to do when he gets past this. Kids are resilient, is my hope for him. We are going to choose optimism sprinkled with denial because the alternative is..... So anyway, little bits of info are trickling in, they said for some reason due to sepsis or medicines, his major blood vessels dilated all over his body which dropped his overall fluid volume. They are leaning more towards sepsis, but he can't get a fever since they warm & cool his blood with the machine. So, they don't know for sure until the cultures come back in a few days. The hard part is that every bump can be a major disaster or a bump. You don't know until after the fact. Thank you sooo much for the prayers, love & support.

not sure what it all means

The preliminary review of the ultrasound of the clot in his carotid artery shows it is not there anymore...did it dissolve or break off, that is the big question. Dissolve is good, break off is bad. We are waiting for the final radiology word. His numbers are stable. They are not adding to the machine as much now. He was tinkling sooo fast they could hardly keep up with it by putting it back in the machine. His fluid volume dropped and he couldn't keep his saturation numbers up. Everything now has leveled off & he is fairly stable. The big question is where is the clot? Is he septic? We are not sure what this all means, the answers will come I guess. The drug holiday is apparently different on ECMO than what I understood originally. The way it works here is they turn off the meds & at the first attempt to breathe they turn the meds back on. I guess the diaphragm muscles are the first to wake up. I can still whisper to him how much we ALL love him & are praying for him ♥ Thank you for the prayers!! ♥


Just riding the waves. It was quiet all night, his kidneys were showing off how much tinkle they can his saturations are lower & they think he needs more fluid.  When the doctor walks away & says I'm not worried, it makes the alarms sound less scary.  The doctors are very straight forward here, which is VERY nice. It's the good kind of blunt & I love it.  It makes your heart skip a beat when you leave for a minute to run the laundry down & come back to a bee-hive in your room.  Happy it's just a wave.  There will be many more. I am thankful for each & every wave.  Thank you for the prayers  <3

Lower settings

They lowered the settings on the machines again. Now, we wait to see the x-ray in the morning. This will let us see if he is tolerating the lower settings. Very exciting, tomorrow they do a "Drug Holiday" this means they lighten up the medicine that keeps him still to see what his brain is doing. It will also let us see if he can tolerate being mellow & sleepy instead of kept still by medicines. If he is still all of the time, his muscles will get super squishy so they need him to twitch & wiggle a tiny bit. He will still have plenty of "forgetting" medicine so he won't remember any awake-ish times. The good news is that means we may get to talk to him & he can respond! It is important to keep him comfy but the less medicines in his system the better. If he wakes up too much...back to happy-land he goes. They will start to do these "Drug Holiday" tests once a day now. They didn't say a time, just sometime tomorrow. I am excited & nervous at the same time ♥ Thank you for the prayers!! ♥

Tuesday, December 18, 2012

He is still with us!!

  1. He is still with us. He seems to be holding on. He is strong. There is a nurse who's only job is to watch the ECMO machine. That poor lady, because she is now my captive audience for my millions of questions. The machine can regulate his temperature, so no more fevers. It regulates his mini-blood tests & his saturations. It can't help his heart rate or blood pressure, they are normally fine
    during all of this anyway. All of his other organs are doing great, stellar, is what the doctor said. It's just his lungs that are really sick & this will let them rest & heal. His low to no immune system as part of the chemo from the fight with Leukemia, left him susceptible to any virus or germ in the community. He has been fighting it all but the pneumonia came on fast. So, with the ECMO, there is just a big risk for infections since he has the openings where the main tubes of blood have to go back into his body. His immune system is better but not great, it's immature, since he just recently got it back from finishing all of his hard leukemia treatment & moving into the maintenance phase. This machine is like mechanical lungs washing the blood of carbon dioxide & oxygenating it. They said he can be on it for a few weeks to a month, but with big risks. There is a chance he could be fine too. They also have to thin his blood with heparin so he is at big risk for bleeding or blood clots. They will ultrasound his head every other day to check for strokes. It is just a risk for this machine. The other option was to not do this machine and he had 24hrs the doctor said. The words a parent never wants to hear. We won't give up, never ever(NEGU). That is not an option. We want to do what is best for him & right now, this is what we as a team with the doctors, think is best. So here we are, watching waiting & praying. Thank you SOOOOOO MUCH for the prayers!!! They worked, every prayer counts!! Loves & hugs to you all ♥

Monday, December 17, 2012

Moved to ECMO lung bypass machine

He is all finished. He survived the surgery. The first hurdle behind us. Now we need to make it through the night. We were able to kiss him & tell him we love him & how strong he is. They made us leave so they could finish clearing things out of the room. We have a lot to learn about this machine tonight. He is a fighter!!! Thank you for all of your prayers, love & support. He is going to have a great story to tell someday ♥

Next blood test @ 4pm

Nothing new & nothing worse. Steady. Just waiting until 4pm. Please pray. Thank you

Sunday, December 16, 2012

Treading water

We just treaded water today, minor ups & downs.  From day start to day finish I think it's a break even day.  We just need to hold steady a little while longer.  At the finish of every day we are one day closer to going home.  He had a new blood gas line placed, it's like an Iv, but more involved.  He did well, and he got some blood too. He has good nutrition, good medicines & good rest.  He has everything he needs to kick this.  He just needs strength & prayers.  Dad is coming tomorrow for a couple of days so the twins are having a big adventure at Dixie & Blane's house! Thank you! Tomorrow is our 6 year wedding anniversary. Wow, that went fast.  Hopefully he will get some good rest tonight & continue to hold steady.  The doctors say that if he can just hold steady, they will consider it a win & that is what he is doing  <3 Thank you for the prayers  <3

He is hovering

His air leak is healing <3 Ok, so his lungs are having a tough time removing the carbon dioxide from his blood. As I understand it, he has reached his "peak" of badness and started to get a little better. Now he is just hovering at these higher levels.  His kidneys are the "Balancer" of the body.  His kidneys produce something called bicarbonate, it is supposed to balance the Ph acidity in his blood. The medicines to kill the cooties, also run through the kidneys. So, the kidneys have to work extra hard to balance his body & process his medicines. Right now, they are ok but the numbers in the kidney tests are slowly creeping up.  They are still ok, but creeping in the wrong direction. The numbers are creeping up because his lungs are still very sick from the cooties.  So, we need to pray for his lungs to have better carbon dioxide removal, pray for the lungs to heal so that they can exchange those gasses. That is the first part to him relieving some work from his kidneys so that they can stay working effectively.  That is your anatomy lesson for today :)  We are also treading water until the blast medicine kicks in, just 1 or 2 more days he needs to just hang in there, for it to start making a difference. Positive energy, prayers, Gods white light...whatever it takes, from whatever belief system, we will take it all!! I am the prayer beggar <3  He is teetering, maybe it can all help support him.  We need to buy him some time for things to start working. Thank you!!  <3

Saturday, December 15, 2012

Just waiting

He is doing ok this morning. That transition was hard on him and we are waiting for the rounds to tell us what the x-ray says from this morning, if he is stable or improving. His mini-blood tests are on the higher side but they say considering all of the transition they are ok with it. His big blood tests are great & he received more blood yesterday. It is all so delicate. We are supporting him until his body says ok lets kick this into high gear!! ♥ Please keep the good energy & prayers coming ♥

Friday, December 14, 2012

Still stable...whew!

He is still stable, so far. Whew, that was a close one!! They said ups & downs, I guess they mean big ones. So far, he is holding steady, we will know more about his air leak in the morning x-ray. The new meds are started and the "Blast" of new meds starts at 11pm so we will hope this is the ticket to get us back on track. Thank you all so much, keep the prayers coming please ♥


He is officially stable now, he is responding to the new/old ventilator. His mini-blood tests are better too. They went really high during the transition. They are going to try some new meds. The PICU doctor said "good things here happen slow, bad things happen fast" I am just happy to be stable for now. Thank you, once again, those prayers got us through another rough patch. I can't thank you enough!! ♥

More prayers please.

More prayers & positive energy please. He is switching to the high/ steady ventilator, just at lower settings. It is a more constant pressure so he can heal this leak. This is the most effective treatment the doctors recommend. The kind of cooties he has are being resistant to the medicines too. He has some tough ones. Things are getting dicey again, more than just a bump. Please say some more prayers. I will post more in a couple of hours to see if the mini-blood tests get better. Thank you for the big prayers, again!

air leak

So, the x-ray this morning showed a probable air leak near his sternum. This is a tricky place to get a leak. The most conservative treatment is to go back on the other ventilator at lower settings & keep him really still so his body can heal this. he is showing little signs of improvement, the virus/pneumonia in his body is making the doctors think really hard. Nobody said this would be easy. It is probably best to keep visitors to a minimum, since there are so many doctors coming & going they don't want me exposed to anything by close proximity to other people (hugs). It is getting to be the germ-iest part of cold & flu season. Thank you for understanding ♥ Thank you for the prayers ♥

Thursday, December 13, 2012


Thank you for the good stuff today. Hopefully tomorrow will be a better day. Please pray for good test results, happy saturations & good mini-blood tests. Every road has some bumps, today was bumpy, so please pray tomorrow will be easier & full of good news. Thank you!! ♥ I will post in the morning unless something crazy happens. ♥

Wednesday, December 12, 2012

Bumpy day

He is doing well after a bumpy day, the best part is that he is better tonight than he was this morning!! Sorry if I am gross, but we are celebrating a big gookie day. It is the main goal to get it moving & the respiratory therapists are doing a wonderful job giving him breathing treatments & removing it. He went down 2 notches on his ventilator, so that was really good. The bumpy part of today
was when they thought his lung might have collapsed since they got a not happy mini-blood test. It turned out his lung was fine, just the tons of gookies causing the blood test to be wonky. A little diuretic & adjustments & he is fine now. It is all part of the roller coaster that each day brings. He is better now, than he was this morning & he was doing ok this morning. I am in constant amazement at the doctors & staff around here. Last night, there are 20 beds here and they were all full! That is a lot of sick kids. Cold & flu season is brutal. Thank you for the prayers!!! ♥

Steady day

He is having a steady day today. The doctors had to get a little more creative on the medicines that keep him sleepy & relaxed. He wants to play! They found the magic mix, but he just has to keep them guessing. They are not going to push him too much on lowering the settings on the ventilator today. He is having a rest day. They are happy he is getting more gookies out of his lungs. They are
going to give him more medicine, right into his ventilator, to help break it up & move it out, it is called a mucolytic. Now that he is more stable on the ventilator they can look more into his mystery fevers. He really likes his Christmas lights & decorations, posters & cards. I hung up the chain of happy thoughts from the Parkrose students. He likes it :) He was doing a good job communicating what he needed to be comfortable this morning. When he is awake he nods yes or no. He is so tough!! He knows you are praying for him! Thank you so much! ♥

Tuesday, December 11, 2012

long road ahead

Good stuff at rounds tonight! I heard the phrase today "best gas yet!" which means best mini-blood test yet!! I will take it!! He is tolerating super slow weans today. Everyone is in agreement he is going in the right direction. They always follow that phrase with, "but he still has a long road ahead of him" I guess they are trying to keep my expectations realistic too. Baby steps. It appears that he will be bumping down 1 or 2 numbers on the settings each day. Some days he may not have any reductions. Today was a nice day. Thank you Grandma & Grandpa Merrill for the coffee & treats, Thank you Justin for your help today too!! Thank you all for the prayers too ♥

A new phase

We have entered a whole new phase in all of this now. Now that he is on the regular ventilator they want him to breathe more. For him to do this, they slowly tried to stop the medicine that keeps him still & give him more relaxing medicine. The more he moves around and wiggles slightly, the more it gets the gookies in his chest moving and they can help him take those out. They use a super tiny
little suction that takes just a second to use, it helps clear some of it out. It is all part of his intubation tube, it's built into it. Very tricky. He barely notices it when they do it, but his saturations go up when they do it. It is their version of a cough. They don't want him to cough on his own just yet, since it is all still healing. They want to get him to a place where he is just mellow but can wiggle a little & respond to questions, but not absolutely still. We get to find that balance today. They say some kids are actually up and around on these ventilators, some even walk!! Hopefully, that is not in our treatment plan, but I thought it was interesting. I am very happy to have new hurdles. Progress is good. Thank you again for all of the prayers!! ♥

Monday, December 10, 2012

One more machine gone!

The high pressure ventilator rolled out of the room tonight!!! Such a great feeling to see it go. He is doing really well on the regular ventilator. They say people can be on the regular ventilator for more extended periods. All of the night shift nurses are happy to hear the good news about the switch too! There is a rumor that if he stays doing really well I may get to hold him and even rock him
 with in the next few days. I would be super nervous, but absolutely thrilled. It all depends on whatever is best for him. With all of this good news today it feels like Christmas came early! Thank you Bath & Body Works for honoring us as your Christmas family!! My niece Kayleen works there, and they have been following the big fight! Thank you Heather, Clive & the gang for the Christmas lights! Our room is the only one seriously decorated with lights, little tree ect. I asked Cameron if he like the lights & he nodded yes! That is all I need. He really is, happy Cameron under all of that medicine. Thank you!!! ♥ Every prayer counts! ♥ Happy Saturations & good mini-blood tests!

I love "up" days!

What a wonderful day! He is still very medicated but he opens his eyes every so often & moves his arms a little. I showed him his cards & pictures and he nodded yes, that it makes him happy. Under all of that medication, he is happy in there!! His numbers are still high on this new machine, but they lowered one or 2 of them a teeny, tiny bit. I am happy to have to learn all about this new ventilator.
 It is still going to be a while that we are here. We are definitely on the right track! His mini-blood tests are coming back better than ever. I know there will be up & down days....but I am LOVING this up day. We still have a long road but this is a BIG glimmer of hope!! The doctors remind me to still be cautiously optimistic. I have never seen them so happy! Thank you soooo much! I can't express how grateful we are to you for all of your love, prayers & support!! ♥

He nodded his head!!!!!! YayyyyY!

Yayyy! I am mentally doing cartwheels around the PICU!!!He nodded his head slightly!!!!!! He understood when I asked him questions and was able to slightly nod his head yes or no!! I showed him a balloon that I got him that has a kite on it & he lifted his little hand just barely, to touch it!!!! He is in there!! I told him that he was really sick & now he is getting better and how much we all love him & how many friends he has praying for him. I said does that make you happy and he slightly nodded yes!! Thank you sooooooo much for the prayers!! See it's working!! Miracles do happen!! Love to all of you!! ♥

He did it!!!!

He did it!!! He successfully made the leap to the regular ventilator!!! There were big smiles from the doctor, nurses & respiratory therapists!! The min-blood test came back he is doing fabulous. Tolerating it nicely! The other high pressure ventilator is still in the room, but I think it knows, it had it's day in the sun. It is so quiet in here now, its errie, in a good way. Wow! What a great way to wake up & start our days!! Your prayers & positive energy seriously worked!! I can't thank you enough!! Big hug to you!!! Thank you!! ♥


It is a nice peaceful night. They are boosting him up with oxygen saturations for the switch over today. It will not be as big of a deal (to mom)as the bagging or the tube change out. He has shown he tolerates those nicely. They program the regular ventilator then a quick switch-a-roo. They barely miss a beat or breath. It's impressive how smooth they are. The nurse just told me he will be
transitioned first thing this morning. Sorry I am late to post, no news is good news! Things were so uneventful, I fell asleep and zonked out hard. The nurses were happy. They are really great. It is a really good feeling to be a little more adjusted & able to let my guard down for a minute. We only get one shot a this PICU experience, I want to do it right & the best I can. There are no re-do's in this. I am happy to report I heard the phrase "he's turning the corner" today & that is a really good thing!!! There are a few more corners to turn, but I will take it! Thank you for the prayers & positive thoughts!!! ♥

Sunday, December 9, 2012

Smooth is good!

Good news!!! They switched his airway tube for the intubation to a bigger tube with an adjustable cuff. It went really smoothly. The rumor is tonight he will go on the regular ventilator if all stays smooth!! That is a BIG step towards going home. Once again, they said he tolerated the procedure really well. The ear, nose & throat doctor has been doing this for long time, he was really good. Whew, one more hurdle behind us now. Thank you for the prayers & positive energy today today! It's working!!! ♥

Doing good!

He is slow & steady!!! His common cold & C-diff tests to see if he still has them, came back that he beat them!! Negative test results are a good thing here!! Ok, he is chipping away at the cooties! Now he can use all of that energy to make his lungs better! They said that lungs are very slow to heal, so we will watch his progress by weeks instead of days. So far he is in MUCH better shape than
he was a week ago :) he is still working his way down on the settings, they bumped them up temporarily after the bagging yesterday. He is tolerating the weaning so far today. Mom & Auntie T brought some decorations & treats yesterday. They look great! Thank you, the nurses loved their chips! Laura stopped by today with a HUGE basket of treats, decorations, posters & letters from the Parkrose middle school! Thank you Laura, Parkrose students & Kent for everything. Thank you Sophie & Annette for connecting us. I am overwhelmed and so thankful the love & support. You are wonderful!! Big hugs to all of you!!! The prayers & positive energy are working his saturations have never stayed this high, this steadily!! Yayyy! ♥

Saturday, December 8, 2012

Doing ok

He bounced back well from the test today and just holding steady. He has been working his way back down on the settings he is 25 on the machine (goal is low 20's high teens) & if this next mini-blood test we may get to bump down the setting a notch. We may not get to talk to the ear, nose throat team about the new tube until Monday. They say there a re a lot of pieces of the puzzle that need to come together before we make the leap to the regular ventilator. It is at least sitting here in the room waiting patiently for it's turn. Baby steps!! I don't want to wear out my prayer people ♥

Good info!

He has a big air leak around his breathing tube, that is a good thing. It means that the swelling in his throat is going down, from being irritated by the procedure, chemo, virus's, coughing ect. That is very good. The bummer is that the regular ventilator needs a good seal on the intubation tube to work correctly. So, we go back on the high pressure until the ear, nose & throat doctor will put in an intubation tube with an adjustable cuff to get a good seal. We got some good info. The doctor was much happier than this morning. She said it went really well. Thank you for the prayers!!! ♥


He is getting so feisty & strong, he is breathing against the ventilator & setting the alarms off. Giving mom a heart attack when it happened the first time :) That is the good kind of startled awake, he is getting stronger!! It was enough to bring the mob of doctors to the room. The nurses said "he is feisty, we like feisty" They increased his meds since it's not time for him to join us in the awake world yet. I asked "is this just his tolerance building up to the meds or is he really improving nicely? They said it's both...We like feisty!" ♥

Friday, December 7, 2012

Lower settings!!

Slow & steady wins the race! He is tolerating doing super slow weans from the high pressure ventilator tonight. Each day is one day closer to going home. He has had some fevers today, but it is to be expected. Right now he is at the lowest setting on the ventilator yet!!! He is at 23 pressure and he started at 31 pressure. To be eligible for the next easier ventilator he has to be low 20's or
high teens....getting there!! There are 20 beds here in the PICU and 18 are full. The nurses said they will wake me for the rounds. Tonight there is a student in here too, so it is a little tricky sleeping soundly with 2 (new to us) nurses in the room at all times, but they seem really great. Pretty soon they will all be familiar faces. The nurses rarely leave the room, if they do they are at a desk directly in front of our door. He is getting intense, excellent care for sure!!! The high pressure ventilator sounds exactly like a traditional washing machine on spin cycle, all of the time. Prayers for happy saturations & great mini-blood tests ♥ Thank you sooooo much ♥

Thursday, December 6, 2012

Slow & steady wins the race.

It has been a nice day today, Thank you Jen for the great gear, Heather, Clive & Kimberly for the treats & books! The nurses loved the cookies!!! I am going to bed early tonight since my fav nurse Toni is on duty tonight ♥ the others are great too but she is SUPER detail oriented & I love it!! She likes to run too! I love it that I feel like all of my nurses are fighting for Cameron, it feels
like they are really fighting hard for him. The doctors didn't do their rounds last night until 1:30am. Late night for mom. It was a busy night in the PICU unfortunately. We were the boring ones. Cameron held steady today and so far all tests are coming back nothing from his bronchioscope. That is good news, we don't need any new virus or cooties. It appears he is going to be a super slow wean from this machine, but each day is a little better than the last. You can't rush greatness!! Please pray for a night of happy saturation's and boring mini-blood tests ♥

Good stuff

We had a nice night and good mini-blood tests all day & night. Today is a more aggressive wean on the machine since he is doing so well on his "rest" day yesterday. He still has fevers but they are on the lower side. His fighting cells are still high, fighting whatever cooties he has. He is taking more medicine to keep him sedated, so he is in there fighting. His immune system is fighting big, he is fighting big!! The fight is on!!! ♥ Prayers for another mellow day ♥

Wednesday, December 5, 2012

Nice day!!

We are still waiting for the "Mob" of doctors to do their rounds. It has been a very busy day here, not in our room but in the PICU. One of my cancer kids got to go back upstairs but another came down here. This is not where we want to see familiar faces. We are happy to report we had at least 4 maybe 5 mini blood tests that have shown happy lung information. He is keeping up removing his car
bon dioxide and keeping the Ph of his blood in a happy place!!! Very good news since those levels before made us eligable for the ECMO machine. It is one big step away from that machine!! Yayyyy! I will take it!! His saturation's are doing well too. He is mid to low 90's, 100 is the goal. Baby steps! Our nurse tonight is 10 weeks pregnant with twins. Our twins are having a great week with "Dress up" week at preschool. Dad said we had 2 super hero's this morning. Mrs. Serna & the teachers are doing a great job with them keeping them happy. Whew! We are waiting to hear if he will sleep on his tummy tonight. The bleeding has stopped. Nexium is wonderful. The idea to "prone" (sleep on his tummy) him for 11 hours, shifting every 2hrs. The idea is to get the gookies inside his lungs moving. Prayers for high saturation's and quiet night ♥ Thank you!!


1,999 likes! Crazy!!! Thank you everyone ♥ He is being really good today, keeping steady & tolerating the wean. Saturation numbers staying steady. Steady is good. Baby steps! He had 2 mini tests come back good....the start of another good trend. I will take it!! Some of his super sweet buddies(nurses) came down for a peek & to check in. My nurse today is a scuba diver just like our crew so i
t has been nice to talk about something other than possible outcomes for a minute. People ask is there anything I can answer is tell everyone you see to pray or send energy or whatever....tell the lady/man at the grocery store, the bank just recruit as many positive energy, prayers ect. our way. That is a proven help & I think it's working here too. Your way to help is to recruit more good energy for us :) spread the word!! Thank you, just so you don't worry, no news is good news. If it gets dicey I will post a super short message like I did before. No dicey's though!!!! Positive energy's & prayers!!! ♥

Tuesday, December 4, 2012


Oh, he is keeping things busy around here. They turned him on his tummy(doing fine so far with bleeding) to give his back a rest and he is being wonky with his saturation's of oxygen. The normal oxygen saturation for regular days is 99 or 100% his is running in the low 90's so it is acceptable, just not marvelous. It is not at the freak out level yet. They said some cardiac kids walk around with
it in the 70's. He also has a fever too. His little body is fighting!!! I was excited to have the super sweet nurses ask us if we would like them to be our primary nurses!! You get a primary day & night. They said it is good to have consistency so they can get to know him & his issues. I have a feeling they are going to be family :) I pestered one of the doctors enough to get a ball park estimate of when we may get to depart...probably a month we will be here in the PICU (just an estimate) I know they don't want to get hopes up since everything is so variable. Thank you Jen, Grandma & Grandpa Merrill for the treats! Ok, prayers that his saturation's level off & get steady instead of wonky! If it keeps doing this, it will get in the way of his weaning from the ventilator. Thanks oodles!! ♥

Cautiously optimistic!!

A nice quiet night & morning. They were able to lower some settings. The tummy bleed seems better/stopping, they are stopping his steroids completely now. Tests are coming back slowly with nothing exciting one way or the other on them. I was listening to the "mob" of doctors doing their rounds this morning and I remembered them previously talking about, not to watch the numbers but the trends, t
he trend with the doctors is that they seem to be overall happier each day. They discuss the "doom & gloom" (what if's), but they have some really promising things to say too. They are trending towards the good stuff, but is all tentative. I heard the phrase "Cautiously optimistic" .....I will take it!!!! No big plan today, just tweeking medicines & slowly lowering ventilator settings. I am so ready for boring, bring it on :) The prayers are working!!! ♥

Sunday, December 2, 2012

Nice day!

I am happy to report there is nothing to report :) a nice quiet day again. The doctors said that they wanted to keep weaning him from the high pressure ventilator to the regular ventilator. If he tolerates the wean, he may be on the regular one by Wednesday. Progress! I am a big fan of quiet nights here. Thank you Auntie T & family, Angie, Lance & Grandma & Grandpa for the treats, the Docs & nurses loved their treats too! It is good to spoil the people who take care of us too! I got the official word we will be here for Christmas :) I hear that they really do it big here & Santa will come to his room!!!


Whew! When the doctors did rounds this morning I stood outside the door & eavesdropped...I'm nosey. Anyway, they told each other the phrase "that's good news" about 6 times. They said "he is on so many different treatments, but that something is working, he is getting better!!!" His infection fighting white blood cells have double 3 times!! Their words were "they have increased dramatically!!" They don't use strong words like that unless it is really true. He is FIGHTING!!! It not just me saying all of this positive energy & prayers are working, here is the proof! Thank you!!!!!! Please keep them coming, we are not out of the woods yet, but we can at least see the meadow in the distance!!

Another quiet night!!

Yayyyy! Another quiet night! We didn't make much progress but we didn't go backwards. We just bought more time for the antibiotics to work. He is now off of the TPN iv nutrition and using an NG feeding tube. His body is tolerating that well. In the start of the madness he had 14 iv computer pumps giving him meds and now he is down to 9. Progress!!! I start getting excited, but then they remi
nd me that this is going to be a long haul, like Christmas weight, it comes on quick but takes a while to take off. I thought that was a really good way to explain it. He was pretty puffy for a while there but all that fluid is coming off so he looks better too. Right now he is sleeping peacefully. My goal is to have a really quiet next 2 days and sit back & watch the good news roll in. It's good to have goals :) Thank you for the prayers/energy, please keep doing's working!!!

Saturday, December 1, 2012

Ride the waves!

Today has been steady. The doctors said he is better from when he first got here but that he has a lot of work to do before he gets to go home. His blood tests are looking good and we ride the waves of the wonky oxygen saturation numbers. It is his Big Job to keep his oxygen levels steady in his bloodstream. We were able to go down some on the levels of the ventilator, but no big steps, just baby ones. The carbon dioxide level in his blood was up & down, but down more than up, so that is a good trend. They say if you obsess about numbers you will go crazy, but to instead obsess about trends. They speak my language :) It is nice to know what to obsess about ♥ Thank you Kayleen for my treats!!

A nice night

We had our first uneventful night!!!! What ever you guys are doing to send prayers, healing thoughts & love is working!!! They were able to turn down some more of the settings on the high pressure ventilator called (Peep), the goal is to move him to a regular ventilator that allows him to breath along with it, but still heavily sedated. The one they use now, they have to stop the urge to breath
h completely using paralyzing & sedating meds. He is such a little fighter, he want to keep breathing through this machine too. He got some really good rest, the monitors showed he was very happy & comfortable. He has pneumonia from the low ANC# & cold/flu season and maybe swallowing issues. It is a combination of things all at the same time, at just the wrong timing to set us up for this. His lungs became very fluid filled and he couldn't cough it out anymore so they became closed off. It came on super fast, he went from having a little cough, to a more deep cough occasionally but still sounded clear & able to move air when he breathed to closed off sounding. They did the bronchioscope procedure to see what was going on & it showed how quickly his lungs filled up with inflammation. When his white blood cells (fights infection)started coming back from the chemo they went straight to his lungs to fight the cootie, but is was overwhelming to his lungs to have that much instant inflammation to fight the cooties in them. They filled up with gook & inflammation and made it hard for his body to get enough oxygen & to remove the carbon dioxide. These ventilators open up the surfaces inside his lungs and allow the body to heal & remove all of the irritation and air exchange. Now we just wait & heal, hopefully each day weaning the med & ventilators.

Friday, November 30, 2012

Good news!!

Good news!!! We just received a mini-blood test result that we obsess had no red flags!!!!  One more baby step forward!

Holding steady...

Holding news is good news :) The late night/wee hours is when it gets crazy, but hopefully tonight will be quiet. We are in a better position than we were last night. I will take it :) Please keep praying & sending the positive energy!!!

Holding steady

Holding steady, still on the big guns ventilating machine but they have not mentioned the ECMO lung bypass machine today so far. That is good. They are slowly lowering some of the settings on the one he is on so that it is not running at full blast anymore. I like that too.  All of the super sweet nurses/doctors & CNA's from upstairs at the cancer kids have popped by to check on us.  It looks like we will be here for Christmas. There is no word when he will be off of this intubation or on an easier ventilator. We are just waiting for him to keep getting better.  The twins are with Aunt kiss & dad got up here yesterday.  It is super nice to have another set of eyes & ears listening to the doctors.

Keep doing it :)

He is still here!!!! He is seriously amazing!!! That was a rough night. He is on an upswing pattern again. Yayyy! He got as close as you possibly can to needing the ECMO lung bypass machine. We want to avoid that because it is the last resort. At least we have a last resort, but we want him to move in the other direction. The prayers are working the positive energy or whatever you want to call it is working...whatever you are doing please keep doing it :) We are not out of the woods, but we can have more hope! :)

Thursday, November 29, 2012

We are running out of tricks

So, we are using our "bag of tricks" and running out of tricks. We have 2 left...we are using 1 of 2 tricks now. If this doesn't work he will go on an Ecmo machine, it is a lung bypass machine. It is kind of like what they use for a heart, but this one is for the lungs. Basically this machine will clear his blood & oxygenate it too. It has a ton of risks, but we are getting to the point that
this is it. The nurses say there are tons of kids that are on it & do fine. There are some that have bad side effects. This is the decision we have made, to go ahead with this if the current treatment doesn't work. Ugh, we will just take the odds he will come out fine. No guarantees, but it is hope. It is going to be a long night, keep those prayers coming :)

Good news!!

Good news!!!!!!!! The nurses exact words are " In this small moment of time, he is a very, very, very sick boy but at this time he is starting to turn the corner!!! He has hit the worst & starting to come back up!!!!!!!!!!!!!!!!!

This is the big fight

Cameron is still with us, he is fighting with everything he's got. There is a lot of ok blood work but a few not so much. This is the big fight, right now.

Baby steps!

So far, so good tonight.  The numbers are going in the right direction so far.  His heart rate is lower so that means he is relaxing nicely to all of this new gear.  He still has a lot more steps to take, but he is taking baby steps in the right direction so far. It is a good start.  It is really interesting to learn about all of these new machines that they use to monitor him.  Technology is really amazing how they can pick up on the slightest changes.  There are some seriously smart people speaking a medical language(the terminology),  I may as well be in a foreign country, for as much as I can pick out of the conversations they have. My nurses are great and have given me a tour of the monitors in his room & what the numbers, waves & noises mean. They have translated some of the intense conversations that the doctors have among themselves too. He is peacefully sleeping even just now in the time to type this, his numbers are a little better. Go Cammy go!! The prayers are working!

Wednesday, November 28, 2012

He is intubated

They did the procedure where they put him to sleep & check out his lungs again(bronchioscope). He appears to have more going on than the last time they did it. He is intubated and resting very comfortably. He will stay that way until we get more information. There isn't a lot of information yet other than he is sleeping & the monitors are steady. By 48 hours from now we will have a much better idea of how things are responding. Right now, there are a lot of variables. Once again, watch & wait. Thank you for the loves & prayers!! ♥

We are back in the PICU

Cameron is back in the PICU(Pediatric Intensive Care Unit). His rhino virus (common cold) is settling in his lungs. The x-ray showed he may have pneumonia. The doctors just wanted to watch him closer with more equipment. They may do a chest CAT scan & MRI possibly another bronchioscope procedure. They are not ready to do anything drastic yet like intubate him. Just watching & waiting more closely. Oh, & you can say some prayers for him too :) Thank you!!

Monday, November 26, 2012

He has a cold with the low ANC :(

It was a quiet day. Nothing new, fevers off & on which is normal when his counts are down so far. His nasal swab came back positive for Rhino virus again (common cold). Looks like we will be here a while. Thank you Grandma Merrill for the yummy dinner & coffee! ♥

Sunday, November 25, 2012

Here in the bubble

It just occurred to me that tomorrow will be 7 weeks that we have been here at Doernbechers (minus 48hrs). Wow. What a wild ride :) He is in good spirits this morning, his ANC is still zero & his white cells dropped again too. He had some fevers overnight. They think he has a new cold just waiting for the test result. Our adventure to the 7th floor may have been the window to get a new cold.
In his defense, his ANC# dropped 1000 points overnight that night. He had an immune system when he was there it just dropped super fast. That is the fastest I have seen it drop too. I think this is the lowest his ANC# has ever been. He will be getting more IV antibodies today. They said it should help give him a boost. We are here in the bubble :)

Saturday, November 24, 2012

low ANC#

Today his ANC#is 0 so I am SUPER happy to be here. He had some fevers overnight & they gave him some blood too. He may get another dose of antibodies too to help him too. They think he may be having a reaction to the Vinchristine chemo that he had. It may be the factor causing him to lose his voice. They said it is a know side effect to it in small children. All of this is familiar to them with other kids so that is reassuring. The fact that he was doing so well when the twins were here is also reassuring too, that he is bouncing back from things, it's just cold & flu season & it's everywhere.

Friday, November 23, 2012

Here we go again....

We were soooo close to going home....boom. His ANC# went to 100 which means his resistance to infection is super low. They thought he might skip the low ANC# but, no. When the ANC# is below 500 he can't go out in public, grocery store or assembly's. He got a 103.4 fever last night. They said it will be another week and half or more until we can think about going home :( I am very thankful this all happened here and not at home. The day before he was doing so great I was VERY ready to take him home. Now, I am very happy to be here where he is getting such great care. It is amazing what 24hrs can bring :)

Thursday, November 22, 2012

Happy Thanksgiving!!

Happy Thanksgiving!!! We had a nice visit this morning with Laura and our new friend Kent. A great way to start our day :)  I am thankful for my husband, Keylin, Cressey & Cameron. Our wonderful family and friends old & new! The wonderful doctors & nurses too. Cameron had a fever this morning so maybe Saturday we can go home!! That will be wonderful!! We are very thankful for Cameron making it through his hard treatment. There are so many things & people to be thankful for including all of the love & support, the list goes on and on! Thank you soooooo much! They have 3 turkey dinners here at Doernbechers & OHSU today so bring on the stretchy pants!! :) Cameron is already napping, just thinking about all of that turkey must have put him to sleep already. Have a great day!!

Wednesday, November 21, 2012

We did it!!

We had a great day today! We had a fun visit from Laura this morning with fun treats too. Thank you!! Cameron loves the treats & posters! We had a great visit from "Team Cole" He is one tough fighter too! Thank you for the goodies! The spinal tap chemo is finished, the kids & dad had their super fun visit, he had his graduation cake! The end of a BIG day! He is doing pretty well, still fighting hi

s irritated throat but his voice is coming back a little more each day. He is so tough! Thank
you everyone for cheering us on to help get us to this point. All of your kind words, love, prayers, fun treats & support have made this crazy adventure much easier for all of us! I wish I could hug & thank each and every one of you. Watch out, I just may do it if I see you ♥ no one is immune to my gratitude :) Thank you all SO MUCH!!!! It really has made a big difference! Thank you!!!! ♥

Tuesday, November 20, 2012

Such a fun day!

We had a super fun day today! The twins & dad came for a visit! Amy came to play too! It was a wild day, I'm tired :) It is the best kind of tired! Tomorrow is Cameron's spinal tap & spine chemo, then Vinchristine and then he has finished the hard chemo treatment phases!! It's a big day! I feel like running around the halls saying! "He did it!!!! He did it!!! He made it through the hard stuff!" I am so relieved to be starting maintenance. One Doernbecher visit a month, 5 days a month of steroids & 2 or 3 pills a day! "Whew" doesn't even begin to cover it :)

Sunday, November 18, 2012

Nice & quiet

Today was a nice quiet day with fun visitors, Laura & Melinda (Auntie Mo-minda). Thank you! Cameron's having some issues with nausea from the last chemo, but each day it gets a little less. His heart rate is up but it could be from any number of things, but nothing of any major concern. They are slowly weaning him from the steroids & he seems to be doing well with his breathing. It looks like
 Fun in the playroom with Auntie Mo-minda & friends
 Super sweet notes & pictures from the Parkrose  students!
 Love that Mickey!
 Big hugs with Laura~~
 Parkrose sparrow club are selling these, Cameron wanted them all  :)

we will be here for Thanksgiving. They do a big catered one on the 11th floor for the whole hospital & will bring a plate to us. The fun news is tomorrow is the Chelsea Hicks foundation is doing "Chelsea's Closet" it's when the kids get a costume & do a parade around the clinic & patient rooms. This time we get to join the parade instead of watch from a window from isolation. It will be fun to see what he picks out for a costume! :) Wednesday is our BIG DAY!! Last chemo before maintenance!! Whaaa hoo! That will be our "what we are thankful for" this Thanksgiving for sure!!

Friday, November 16, 2012

Another great day!

 Love my bear!!
 Helping mom do laundry
 Cameron & his buddy Daniel
 Dr. Merrill Checking out Nurse Kristen's boom boom
The blankets block the lights from the monitors and make the metal bars feel/look more cozy

 Cameron had another good day. The steroids are keeping everything in check.  Grandma Merrill came by with treats! Thank you! That was our big event for the day.  He did take about 6 steps in a row at least 5 times. Our new friend Tiffany let us borrow the bunny ball and he had fun kicking it in the hallway.  He is getting more motivated to walk.  The rumor is tomorrow if his breathing stays stable we may get to go to the physical therapy indoor play ground.  I have heard it is really fun there. We are hoping for another quiet night too :)

He had a nice day!

He had a nice day today. He is still having the breathing issues & received some more steroids. We are just waiting for the test results to start rolling in :) no news yet.

Wednesday, November 14, 2012

We are out of the surgery!!

He is out & doing really well!! He was on the tube a short time, but is off now. They gave him more steroids so we are skipping the PICU & more intubation!!!  Whaaa hooo! See, the prayers totally helped!  Once again our little champ surprised everyone.  They said the swelling was all above his vocal cords so that is a win too!  The Dr took a ton of samples & cultures so the next few days may have some answers when the results get back!! Yayyyyy!

Tuesday, November 13, 2012

Tomorrow is a big day!!

Getting a little nervous about tomorrow. We are not sure what time the procedure is since they are working us into the schedule. We could get in fast or we could wait all day. He has to be no food/drink staring at 6am. There is a big variable how long he will stay intubated & in the PICU. It depends on how irritated his throat gets from the procedure. It may be a day or 2 or even a week. They have no idea until it is all over! This would be a good chance for some Big prayers. Thank you~~♥~~

Monday, November 12, 2012

Here we go...

So, it looks like Wednesday they will intubate him & get a good look in his throat.  He should be in the PICU  for a few/several days afterward to settle his throat down & heal.  They will be able to get a complete picture of what is going on in there and perform any tests to get him on the mend.  From Cameron's point of view it will just be a really long nap :) He is finally eating like crazy from the steroids but he is having some nausea from his chemo that is irritating his already sore throat.  This will be a good thing, he will get IV nutrition & his body will get some serious rest so it can kick whatever is going on in there. Hopefully this will be the last bump in the road :)

We are back upstairs!

Yayyy! We are out of the PICU & back with the cancer kids! His breathing is still labored, but steady. His last dose of steroids is at midnight so tomorrow morning will give us a ton of information. We will know if he is over the hump or needs more people involved. Tonight should be a nice quiet night :)

Sunday, November 11, 2012

We are back in the PICU

We are back in the PICU (pediatric intensive care unit). At around 1am his rattle came back even though he is on the steroids. Since it broke through the steroids, they felt more comfortable watching him in the PICU. Right now they are not too worried, more of a watch & wait. If things do progress they are armed & ready!!! They are the experts in this stuff and he is in GREAT hands. They said it may be a new mucositis irritating his airway from the chemo. There are no tests to do, it's just wait for him to heal. He still has 2 more doses of chemo so they will let us know if they will finish it. Just a waiting game. They said they deal with this sort of thing all of the time :)

Friday, November 9, 2012


We just dodged a night in the ICU, his breathing got really labored due to the croup virus. There were 5 doctors in the room that agreed if the steroids didn't start working in an hour we were off to the ICU. The steroids started working and he sounds a million times better. That was a close one, that was 3 of 5 doses we are allowed hopefully he will beat this before we use up the 5. Now I can unpack & settle back in :) It is going to be a goodnight now :)

New word for today "Stryder"

He is still wheezing, I learned a new word, "Stryder". It means difficulty pulling in air. This is due to his inflammation in his throat & vocal cords. The medicine that works best on stryder is steroids but since he is having chemo he c
an't have steroids with it. The steroids can do wonky things to his body when he is already in the thick of this kind of chemo. So, the breathing treatments don't work on this kind of stryder either. So the Ear, nose & throat team are coming by today to check him out. Another part to this is, since there is the inflammation in his throat, it won't close off all of the way when he drinks thin liquids like water. In this case a small amount of liquid can go into his lungs. Monday he is scheduled for a swallowing study if this does not resolve by then. They will make him drink different thickness of fluids in front of an x-ray to make sure they don't go into his lungs. The good news is that today is the first day of 4 days on Cyterabine~~The very last nausea chemo!!!! Once these next 4 days are over no more uckies from chemo ever again!!! We have a few more rounds after this one, but they are easier! Yayyy! One less thing to worry about :)

Wednesday, November 7, 2012

Back on familiar turf

We are back with the cancer kids, back in our same room & back in isolation.  The good thing is we are back in the bubble & his ANC is dropping.  Happy to be in the bubble, but miss the family already.  They think he has the croup virus in combo with his previous mucositis from the chemo.  His breathing is noisy & labored so he gets an special breathing treatment the is inflammatory with epi in it. It makes his heart rate increase too.  His fever went up to 104 at the local hospital & the combo of it all directed them to send us back to our 2nd home here.  Since they made us ride the special pediatric "Panda Team" ambulance I feel naked without all of our gear :) Just the bare essentials, but I did manage to bring most of his blankies & favorite stuffed animals! Thank you Laurie for running the stuff up to the hospital :)

Tuesday, November 6, 2012

Fever again

We are back at the Emergency room here in town for a fever 103.2 just to watch him....looks like we are admitted here for the night since his ANC is up...they don't admit at Doernbechers unless his ANC is low enough.  The good news is we get to stay local     :)

Just another bump in the road....the fever is down, the heart rate is down, breathing fine.  Thank you for the prayers!! It worked!  This is our room for the night :)

Monday, November 5, 2012

Home is a great place to be!

We had a great day! So nice to be home! He is eating & drinking small amounts but he slowly becoming more active. He is taking his medicine pretty well. It is still a battle with the nausea, but it is not as bad as it has been in the past. His brother & sister were just loving him all day. It is hard for them to understand why "Cammy" (that's what they call him) can't talk or run & play. I told
them he will soon, he just has to get better from his special medicine that fixes his sick blood & he had an ucky cold too. They seemed to understand that and moved on to the next topic. I was sorting the mail & thank you to all of the sweet people who sent care packages while we were at the hospital!! Wow!! I will get an official pic & thank yous out soon, tonight I am pooped :)

Sunday, November 4, 2012

Good to be home!!

Yayyy! I am SO happy to be home!!! It was such a great feeling to pull up to the house and see Cameron's smile when he recognized that we are home. That gave me goose bumps. Very happy to be home!!! Thank you for all of the love & prayers through this crazy adventure! I still think the prayers worked, at each rough patch it was the best outcome for each hurdle, if that makes sense. Thank you for all of the support too! We are really lucky to have you all supporting us in this wild, crazy adventure. I feel like you have all been part of the ups & downs in this. Sometimes it feels like a pretty wild ride :) Thanks for riding it with us ♥

We are going home!!!!

Yayyyyyy! Wha hooooo! We are going home today!!!!! 1 day short of a month here!! I told them I wouldn't feel cheated if we had to go home 1day before the month anniversary! I would still find a way to be happy :) When the doctors left the room I wanted to run a victory lap!! Yayyyyy!

Saturday, November 3, 2012

The squeaky wheel gets the oil right???

The really good part about still being here at the hospital  is that if things get tricky, it's like having your own personal emergency room,  just lean out your door & say "Heyyy...I have a question" :) The poor nurses & doctors with my millions of questions...they may just send us home so I will stop pestering them :)

Just waiting around :)

Yesterday they did the scope with a little tiny straw like camera through his nose. We loaded him up with Adivan ahead of time and he did really well. He was relaxed and mellow. It went really quickly and he didn't seem too majorly bothered by it, more inconvenienced. Advian is wonderful! They found some inflammation on his vocal cords and gunk just hanging out just pestering him when he breathes. In the middle of the night his breathing got really raspy so they gave him an anti-inflammatory breathing treatment. It ended up helping him, but now his heart rate is staying high (180's). They are slowly weaning him off of the pain medicine too. We tried increasing the pain med to see if it lowered the heart rate, but didn't lower it. We are back to waiting & watching. Maybe Monday or Tuesday if all stays quiet! He had fun playing with some play-doh today!