Info for the funeral

Thank you for my break from posting, I am not quite myself yet. Today we had the appointment to plan the funeral. That was BRUTAL. The people there were really super nice, but it was a mom's worst nightmare. Those decisions no mom should ever have to make. My hubby & sister were there to help. I highly recommend that. So far, during my quiet time, lots of crying, lots of (mental)medicines from my doctor and therapy starts tomorrow. This is the post I never, ever in a million years wanted to post. The unthinkable has happened, The worst pain in the world for a mother has been dealt, owchie doesn't even begin to cover it. We officially have the date of the funeral Service/celebration of life for Cameron, Saturday, January the 26th at the Suburban Christian Church 2760 SW 53rd Street, Corvallis, Oregon at 11:30am Anyone is welcome, if you are reading this, please consider yourself invited. I will probably be a mess so you may have to actually get in my face to say hi. The twins & dad will be there so please use gentle words around them. Thank you everyone for all of your love, prayers & support!!! I truly believe we made it as far as we did running on prayers!! I can't thank you enough. You really truly, sincerely made a tough time easier for us. I truly believe that!! Thank you to each and every one of you for being God's Angels
helping someone you don't know or hardly know through a really tough spot. That makes you one of the "Good Guys" one of his Angels, I plan to read every post on here once I get a little stronger mentally, right now I need some sleep. Oh, can you please pray for no more nightmares ♥ Thank you ♥ See you Saturday, January 26th if you are up for it, if not I totally understand too. Since you are all part of this family now, you are all invited. Big hugs to you & a big thank you for all of your love, prayers & support ♥

We told the twins

We told the twins last night. They cried really hard. As expected. We talked about heaven, and how some toys when broken can't be fixed and that Cammy's body was broken and it couldn't be fixed. The doctors tried really, really hard but it just couldn't be fixed. That made it his turn to go to heaven. We all get a turn to go, we just have to wait for our own turn. God gets to decide when that is. Cammy is really happy there because he doesn't have to take anymore yucky medicine, or tubies or have to go to the sick blood hospital anymore. He gets to grow his hair back too. He got a brand new perfect body in heaven & he can run & play with his Great Grandparents & Grandpa Bill and Morgan(our dog) Laney & freckles(Our kitties). He can give Jesus a big hug for us and watch over us too. Cameron can jump in the best puddles & fly kites all day. In the big picture, it won't be long and it will be our turn too & we can all be together again. I think that was just about the most simple way to get the point across. They seemed to understand. We talked about the funeral. The funeral is the place where people say goodbye to Cameron & talk about how loved he is. There would be lots of people talking about Cammy, telling happy stories and it's ok to cry & ask questions any time. People cry at funerals because they miss Cammy too. There would be a bunch of pictures of Cameron there too. There will be white box with flowers on it, Cameron's spirit is in heaven but his earthly body, that he doesn't need anymore, will be put away in a special place to rest. That is what they know. We have some kids books on explaining it, but they didn't seem interested. For four years old, I really think they really understood. That was the hardest conversation we have ever had. My therapy session went pretty well yesterday, now I am going back to bed to cry. Maybe tomorrow will be easier, hopefully I will get back to work next week. Start back to living again. There are no words for how much this hurts. Thank you for all of your prayers, love and support.

It was a big fight, but it's over. The cerebral bleed could not be stopped. The heparin from the ECMO made his blood so thin it wasn't able to clot and stop the bleeding in his head from the stroke. He needed the heparin to stay on ECMO & if we stopped ECMO it would be the same result. There was no way to stop it from getting bigger. When it got big enough he had no more brain activity. There are no words to describe the pain we are in and the gigantic hole that is left. He is in heaven now with no tubes & and a new body. His passing was peaceful and he knows how loved he is by us and all of you too. Thank you sooooo much for all of your love, prayers & support. You really made this journey much easier for our whole family. Just because we didn't get a "magical" miracle, we did get the miracle of his sweet little life & I am thankful to God for that. Please remember him as the happy smiling little boy. I can't express how thankful I am for all of you. Our little angel now has his wings. Our hearts are broken but he is at peace now. The twins don't know yet, we plan to tell them on Sunday. We need some quiet time to adjust and just & get strong before we can talk to them about this. Our whole family is going to need some quiet time to adjust to this enormous loss. Words just can't express. We will make arrangements for the funeral and let you know the details. It will be in Corvallis. Thank you for everything.

quiet day

He is too big for the portable CT scan. That means no scan, because they don't want to move him. We did move one room over just to get a fresh start. His stroke seems to have stabilized for now. That is the risk of all of that heparin keeping the circuit going. He is able to respond a little. He can't nod his head anymore but he can close his eyes when I ask him to. The good news is that he is young and this is fairly common. He may be able to come back from this eventually. The cure to a clot is heparin & it is also the cause too. We have to wait until the morning x-ray to see if the surfactant helped. It has to sit and marinate in his lungs for 6 hours. It's odds of working is slim but Seattle Children's hospital thinks it's worth a try. Oh, last night the ECMO machine turned off since it sucked air from a line. A nurse & doctor had to hand crank the flow on it until the perfusionist could get here to make the machine work again!! Once he got there, he got it back online. That was another hard day. Today has been a quieter day adjusting to this new phase. Thank you for the prayers!! ♥

tough day

So, he definitely had some kind of significant event in his brain. The jury is still out exactly how major it was. Hopefully the CT will give us more definitive answers tomorrow morning sometime. Right now, he can open his eyes to watch Diego. He can hold mom & dads hand and push it away. He has full movement on one side & slight movement on the other. He is not in any pain as far as we know.  His pupils are equal & responsive. The doctor said as far as we know, at this moment, we are staying the course of treatment. There is so much to pray for, I don't know where to begin to ask you to pray for. A miracle is a nice place to start <3 Thank you for all of your love, prayers & support <3

scary

So, still waiting for him to come around out of the fog of medicine. Hoping for the best, but preparing for the worst. The doctors are leaning towards a stroke or brain bleed. I am not there yet.It could still be the medicines keeping him foggy. They have cut them like crazy, but he is still super sleepy. Some of these drugs have a long half life. If he is still like this tomorrow we will do the CT scan to get more info. Prayers please!! ♥

Ugh

It would not be a day here without a ride on the roller coaster. So, since his circuit change on the ECMO he was wide awake and interactive. The last few days he has been more sleepy & less interactive. They attributed it to the change & his bodies adjustment to it, including his response to his meds. Ok, so this morning he is just super sleepy & not doing much at all in response to questions. There are concerns that he may have had a stroke or some kind of neurological change with all of the heparin(blood thinners) ect. So, they cut & stopped some sedation meds and we are waiting to see if he lights up. The waiting is hard. If in an hour he isn't showing more interaction the will cut some more meds. If a while after those are cut then it gets really scary and we have to try to wheel him & the entire ECMO circuit down to CT scan him to see if there is brain activity. That is a huge ordeal & takes tons of manpower... prayers please ♥

Wacky day!

Ugh! I think this computer may have a virus. Bummer! The cardiac surgeons re-sutured his canulas to secure them so he can get better flow. His heart rate was up all day & so was his respiratory rate too. He was making all of the nurses & doctors scratch their heads. That is Cameron. He is getting a reputation for dancing to his own music & rules are for other people. He just now started normalizing after a whole day of wonky. We are having his 1 month anniversary of being on ECMO today. The rumor is we have about 1 more month to go on this ride. Then we get to see what the plan is. Every day is one day closer to going home. One of the mom's I met upstairs with the cancer kids, is down here with us in the PICU and her son is SUPER sick with lung issues & ECMO is not an option for him. His mom is super sweet & pretty worried, he could use some prayers too. I told her I would ask you. His name is Alec & he is 18 with a big fight of his own. Thank you sooo much. Thank you for the prayers ♥

Nice night

He had a nice night. The x-ray looks about the same this morning. His rapid respiratory rate seems better it bounces up a little, but it is better. The cardiac surgeons were here this morning since his canula(big tube in his neck for the ecmo) looks a little pulled back. They will be back in a while to see if it needs adjustment or just watching. He is still adjusting to the newer sedation & weans. He is on the sleepier side but as long as he his comfy, I love that he can rest. When he is awake he can move more gookies. Everything is a balence here I guess.Thank you everyone for the prayers for healing, love & support! ♥

weirdness

Every day has it's own weirdness. Each phase of this has it's own new side effects. Today's head scratcher, of "hmmm not sure why this is happening" was that his respiratory rate went to the 80's, normally it's in the 30's. His heart rate went up some too. He was well sedated and the numbers on everything else looked really good. Everyone's body reacts differently, and this may be part of his healing process. We just ride it out until something shows up as a reason for it. Right now it is a mystery. The heart rhythm is much better. It was another nice gookie day. I am hoping for another quiet night ♥ Thank you for the prayers ♥

Nice night

He had a nice night. Things got a little exciting this morning. His heart rhythm did some wonky things. They think it may be due to electrolyte balance. It is a watch & wait and add more electrolytes. He is still getting tons of gookies out of his lungs, so that is really good. The x-ray is not worse so that is always good. Dad is heading out today. The ECMO machine is still happy, Monday will be four weeks on ECMO. No clue yet how much longer the plan is. One day at a time I guess. Thank you so much for the prayers ♥

Great day

You are wonderful, thank you for the positive prayers & energy! I took a nap & dad told me he posted on here :) Cameron had another quiet day, hardly even a ripple. It was really nice to get some fresh air. I knew they had just medicated Cameron & his numbers were holding steady, otherwise I wouldn't have mentally been able to leave the room. He slept the whole time & it was uneventful. Whew. It sure is nice to have one more set of eyes & ears here so I can relax a bit. The nurses are great but to Cameron, they just aren't dad. The doctor just popped in and listened to Cameron & said she can hear some air moving around in there. Even she said baby steps!!!! Prayers for another quiet night of healing ♥ Thank you ♥

Nice night :)

He had another nice night and the x-ray looks a tiny bit better. They said "It's definitely not worse, but if you want to look with rose colored glasses it may better" I think they know me now. He was smiling when he said that. I will take it!! Thank you for the prayers!!! Big hugs!! ♥ ♥ ♥ Praying for another quiet day ♥

Nice day

Ok, whatever you are doing....keep doing it! It was the first quiet day in what seems like forever ♥ Thank you for your prayers & positive lovies! We definitely needed a quiet day. The physical therapy people came by to give me some pointers. His tidal volumes(size of breaths on the ventilator) are up a smidge. Baby steps! The hard part is this is a puzzle with many pieces and some pieces are looking like they may fit, others we haven't figured out yet. It is trending the right way a little, so I will be happy. It is nice to have the new circuit now that things are settling in. We were able to wean on the meds more & he is still comfortable. He still needs me to hold his hand for pretty much all day, but I am happy to. It cuts back on my updates, but I'm sure you understand ♥ It's so hard not to be able to hold him but at least I can hold his hand & kiss his little head. I ask him all day long if he is happy or comfortable & he nods yes. That is what my mommy heart needs to know & I feel better. Thank you again for the prayers! It's working, every prayer counts ♥

Nice night yayyyy!

We had a nice uneventful night and are ready for a quiet day of healing. The x-ray this morning looks a little more equal and things are moving a tiny bit more.  He may be able to start weaning from some of the medicines again today.  The morphine is at a high level but that is a slow wean to keep him from withdrawals. He is on several meds to help out with that too.  I am thankful for it, but I also want it out of him.  Most importantly I want him comfortable, and if we can do that at lower levels that is good all around.  Keeping his liver happy(morphine is processed through the liver) is really good.  So far, all other systems are working great.  It is just those sick lungs that seem a teeny tiny bit better or trying to contribute more. It is all a big mystery until the teeny-tinys add up to big better. I am a big fan of big better. Thank you Zach's mom, you are so sweet! Prayers please for a quiet, extremely boring day of healing.  Thank you  <3

Hard day

I am really ready for this day to be over.  That was a hard day.  The change out went pretty smoothly(Super scary but smooth) but the afterward part is hard.  Now that there is all new tubing the circuit needs to soak up all of the meds again.  All of his pain medicine & anxiety meds had to be given tons of to keep up with the absorption of the new tubing in the fresh circuit.  Also his iv fizzled and he needed a new one.  It was hard to watch that. The canulas slurped up the pic-line iv & needed to be re adjusted again.  Oh, and his tummy tube needed to be re-adjusted several times too.  Now that the day is over, everything is where it should be and the medicines are working.  Rough day all around.  My nurse Kathleen got me through, she was super sweet. Oh, and the doctors probably won't do another bronchoscopy for a while since he can cough on his own. I may skip rounds again, I didn't miss anything last night either.  I don't need the recap of today, I lived it  :)  Prayers for a peaceful night please  <3

The circuit is changed. That is behind us now  <3 Whew! Thank you for the prayers!

here we go again

They have just informed me we now need to change out the entire circuit on the ECMO.  This is a big deal. It is good in the sense it is supposed to give a fresh start again.  It is super scary in that it is the same scenario as yesterday as far as stopping the machine clamping him off, putting a new one on and firing the entire thing up again. Ugh! Scary but at least it is in a controlled situation instead of in the wee hours.  ECMO Queen Carmen & team will do this today too.  She was great yesterday.  Here comes the bee-hive....big prayers again please!!!  <3

big day behind us now

That was a big day I am happy to have behind us now. One less thing to worry about for a little while. Hopefully, this oxygenator will last another 12 days before another switch out. Whew! We are still waiting to hear if they will do the bronchoscopy tomorrow. That is our big excitement for tomorrow. Oh, he is tolerating his midazolam wean and tomorrow he will be at his goal wean for that medicine. Then, they will start to wean his morphine. When he was given the "keeps him still" medicine on the previous ventilator, the only way to tell if he was anxious or in pain was by his numbers. His eyes dilation, heart rate or blood pressure numbers were some of the ways to tell if he was comfortable. Now that we can talk to him, we can wean those medicines that help with pain or anxiety to keep him comfortable & not at massive high levels. He is doing really well tolerating the weans. I just spend a lot of time holding his hand while he naps during the day while he gets used to the partial clarity. The ambian at night seems to really be helping him sleep too. I am ready for another quiet night of healing. Every day is one day closer to going home. I will never take "normal/crazy" life for granted again. Thank you to everyone who took time out of their day to donate blood in honor of Cameron ♥ Thank you again for all of the prayers & helping to get us through this wild, crazy day  <3

Nice night

He had another nice night ♥ The x-ray looks good, about the same as yesterday. Not worse is good. Impressive gookies. The rumor is we get another bronchoscopy tomorrow sometime(it's a good thing). So that is something to look forward to. The plan today is keep up the good work getting gookies out. Not very exciting, but I am fabulous with not exciting. Quiet is very good ♥ Thank you soooo much for all of the blood drives & donating blood!! It is a wonderful gift!! It is always the right size, the perfect color and VERY useful!! The prayers and positive thoughts are super wonderful gifts too for all of the same reasons. Thank you all sooooooo much!!! Big hugs to you ♥ ♥ ♥

1. Thank you everyone who are involved in the blood drives & donating. Every time I see the nurses open another bag of it, draw it up into syringes and feed it to the ECMO machine, I feel so thankful that some stranger out there, took time out of their day to provide a lifesaving gift for my child. I am in awe every day. So many people are helping Cameron through this, in so many ways. I don't know where to begin to tell everyone thank you. So, I will start here, THANK YOU!!!! It was just a quiet day, he seems to be doing some hard work getting gookies out. The x-ray in the morning will tell us more. He had a urpy tummy today but they made some adjustments with his tummy tubes and they seem to be better. The PICU is filling up again, cold & flu season is brutal. I guess next month is the kick-off to RSV season. RSV is a brutal virus too. There are so many ucky, mean bugs out there. It is so weird to be here on the front lines of it all. Watching kids & families come & go and all of the battling that goes on here. There are so many, really, really smart people here. I just want to soak up all of the info. You are going to be an expert in all of this too before this is over. Cameron is really into his Diego movies, Thank you Krista for the surprise movies!! Thank you all for all of your love, prayers, positive thoughts, energy & support!! Every prayer counts <3

   
   
2. 
   

   • 
     
   • 
     

     
     
   • 
     

     <br>
   • 
     

   
   
3. 
   

   • 
     

better

You will not believe this...they are better! There is some, very little but some air moving in there!!!!! We officially have an x-ray that looks a little better! They didn't even have to stare at it and say "well, maybe it looks better", no way, it was "it's better". They are still super sick but we are on the right path at least!!! The super respiratory therapists Stephanie & Debbie worked their magic!!! Thank you for the prayers!!!! ♥ ♥ ♥

Just takes time

Thank you for you patience with the break from info. He was just awake so much I wasn't able to leave him. When he slept, I slept too since I was up all night that night. So, he had a good night and got some sleep. Thank you ambian. He was still awake while but at least a few hours in a row sleeping. They will up the dose tonight to try to get him back on a regular day/night schedule. The x-ray this morning show a teeny-tiny bit better. The respiratory therapist said she sees some gookies from deeper down coming out. Those therapists are great, I am pretty sure they are my mental therapists too!! Now, this doctor wants to bag breathe him today to see how it feels. He said he sent out a mass email & got one reply from a PICU doctor in Salt Lake that said it will just take time. It took a while for Cameron to recover from the procedure but his numbers are happy now. We will just keep riding these waves. One day closer to going home! Thank you for all of your love support & prayers ♥ ♥♥

waiting

They brought him down on his meds & in doing that they added a new one. The combo made him awake, just all day & all night. It was fun to spend so much awake time but it is not the goal to keep him up all night either. They are switching them around again today. The x-ray this morning looked bad from what the doctors say but the brochioscope may give us better info. The doctor said from the xray it appears that it is going the scar/fibrotic route(not good) but hopefully better info will be seen in the bronchioscope to give us more hope. I know I may be crazy, but I am still holding out that it is just fluid overload & gookies. The procedure should be in a few hours. Ugh, BIG PRAYERS please.

Boring is good

Super boring rounds by the doctors tonight. I love it! I am so excited/nervous for the bronchioscope tomorrow morning sometime. The rumor is that it will be after morning rounds. I wish I could wear a mask & be part of that procedure. Since he is on this ECMO machine & ventilator he can't be moved anywhere so all procedures, no matter how invasive have to be done here in our little room, in his crib. That is why they can't do any CT scans to see the clear picture. Everything has to come to him. They have the "tower of power" behind his crib & it has all of the big giant surgery lights on it, plus the emergency oxygen/suction ect. Every room here in the PICU is it's own little operating room/hospital room. He watched a ton of the cartoon "Go Diego Go" today and he seemed really clear. When Diego asked questions he would nod yes or no appropriately. The weaning of his heavy sedation medicine is going well. He is tolerating it well. He is so tough. Just little ripples tonight. Big prayers for positive information from the bronchioscope ♥ Thank you ♥

Big day tomorrow

Tomorrow is a big day too...he gets another bronchioscope in the morning. That is where they zonk him completely out with medicine & use a camera to look inside of his lungs. The camera goes in & through his endotrachial intubation tube(breathing tube). Once they get to the lungs they peek to see if it is sturdy enough to go deeper in to them. If they can, they can suction out a TON of gookies. This will help them get a good idea what we are dealing with in there too. They can see if the lung tissue looks angry or just clogged with gookies, ect. Very exciting. Prayers & positive energy for good results & positive outlook for his future lung treatments ♥ ♥ ♥

Big day

We had a big day. He tolerated it really well. He is sleeping now. Now that he is awake more there isn't as many opportunities to post, but I will keep you updated. So he needed a new iv today so that was a big ordeal that he did really well with. Then, we switched out his endotracheal tube for the bigger one(that's a good thing). They said his throat looks really good ♥ After they got finished with the procedure the ECMO machine had a valve that was turned just slightly the wrong way so the machine alarms went off. We had the room full of calm doctors with the procedure, but this brought in the bee-hive. It was no big deal afterwards but in the moment, super scary. One more gray hair. Super nurse Michelle was in action through out the whole process. She is really good when things get crazy. Now, he is sleeping enjoying his post-procedure medicines. Thank you for the prayers. Despite the craziness, it was still a good day ♥

happy place

1. The numbers are back at their happy place ♥ whew, what an ucky wave that was! We did the poaster board & it turned out GREAT. He used it and pointed to his blankie. He also used his noise maker. My nurse from last night, during the craziness, came back by today to check in on him on her day off!! We are surrounded by super sweet nurses. They are trying some new happy medicines for him so he can start the process of coming down on some of the heavy sedation medicines he is on. I LOVE this! His lungs are still deciding how they want to heal(alveoli or scar tissue), but it's nice to see things moving in the right direction to give him the best chances. There are some people here that don't want me to get my hopes up, since this is so serious in general. Today, there were some great people giving me some positive stories of this possible outcome too. My only option is the positive, I know they want me prepared for all outcomes, but I am going to focus on the good stuff & just ride the waves. Right now, he is in a good place and we will just support him through this process with technology & prayers ♥ Thank you for all of the love, positive thoughts & prayers. I know that I don't know a lot of you, but I can't tell you what it means to me & our family to have so much love & support. Even though I don't know you, if you cheer on & support our little Cameron, you are part of the family in my book, we just have a really big family now :) Big hugs to you ♥ ♥ ♥

   
   

   • 
     
   • 
     

     <br>
   • 
     

It was a long day but he is finally doing a little better! Whew! He was having the fluid balance issue again & then they thought he was septic again. His numbers got scary low and staying there. Now they are slowly creeping back up. We are due for some good news ♥ So, we gave him his baby toy that makes music when you push on it. He LOVED it! He kept pushing it over & over and wanted to show the nurses how he could do it too. He was showing the nurses his pretty smile and he liked that it made the smile & happy. Everyone here is falling in love with him ♥ Other than those scary numbers earlier, he is in a good number place for the minute & I will just enjoy this minute ♥ Thank you for the prayers! ♥

Boring rounds

Boring rounds tonight. After all of those doctors & ultra sounds the answer was.....they have no answer. We just have to ride this out. The sooner we are off of this machine, the better. I love technology, but it is scary too. I think we may have close to a month or more on it ahead of us. The good news is that it was a big gookie day, better out than in. They say you can't breathe with all of that gook in there. That is progress! Baby steps ♥ Ok, we need a prayer for a quiet night, he really deserves one. Thank you ♥

lots of differnt kinds of doctors today

The heart/ECMO/canula doctors were here gathering information. We don't have the final word yet. He is stable at low oxygen saturations. He tends to get exciting right around shift change at 7pm so I am enjoying the quiet. The child psychologist came by to give pointers on how I can help Cameron cope with all of the craziness. I got some really great advice. I am very excited about the great tips. We are going to make a poster-board with pictures of his favorite things that he may want. That way he can point out what he needs. We may get some kind of bell for his hands so he can alert us when he is awake. He had a nice sleepy day. Hopefully tonight will be quiet. Thank you for all of you positive thoughts, prayers, positive energy & white healing light. We will take it all, whatever it takes to get him better. Thank you sooooo much ♥ ♥

2 steps forward 1 step back

5. He seems to have leveled out on much lower numbers. With each new phase brings new things to celebrate and new scary stuff. The 2 steps forward 1 step back rule. They have a theory that with all of the extra movement yesterday that his canulas(big tubes in his neck that bring blood to & from the machine for lung bypass) shifted slightly during the movements and reduced the flow some, but also is started something called "streaming". The blood that is mixing isn't all of the way saturated with oxygen due to the placement, slowing the flow of one of the canulas. So, streams of not as well oxygenated blood go through the body. By the time it mixes all the way around, it is at a pretty good level when it gets back to the machine. They double checked the machine it's self is accurate too. The machine is happy with the numbers, his body is just a big mixer until it gets back to the machine. So, his brain & body are getting good numbers, it just shows up wonky during the mixing process. They have him really sleepy now, he was waving his arm hi and pushing the nurses away too yesterday. We all knew he is a fighter, he is getting stronger and these are the risks that go with that part too. He will get more sleepy medicine more often now, is part of the plan. The cardiac specialists will come by today to check it all out too. I really like his doctor last night & today. It is never fun to see numbers change drastically. Whatever is going on he is more stable now. Thank you for all of the prayers ♥ Keep them coming, we would like to have the numbers back to a really happy place ♥

   Write a comment...
6. 
   
7. 
   

Waves

Waves...he was being really active, swinging his arm & pulling at his tube tape on his face & watching Diego. He was having a nice time(as can be in this environment) The combination made him saturate lower. Now they just want to stay low & very slowly creep up. He was just being Cameron. Right before they gave him more medicine he gave me a big giant Cameron smile. He is sleeping peacefully but the numbers are being slow to move. This is such a wild ride. Prayers please that his numbers go up & things settle out ♥ Thank you ♥

His numbers finally popped back up ♥ My ECMO nurse today had been off work for 5 days and when she came back she said "I'm happy to see he has improved. It's hard to see it daily but when you have been gone it's easier to see." The consensus is that his lungs are a little better, but we won't know for sure until we test them, and that won't be for awhile. If you test too soon it can set him back. The doctors tell me "We just have to take one day at a time and after awhile, the time will be right". Patience is not an easy thing for me to learn ♥ Thank you for your prayers ♥

All is quiet here

He is holding steady. Today his numbers are down a little but that seems to be his routine. Hopefully, tonight they will pop back up. He just good at keeping it interesting. They decided against replacing the endotracial tube(attached the ventilator & uses it to breathe) since they don't want to disturb him until he gets closer to coming off of the ECMO machine. He will be on the ventilator for a while still after he finishes his ECMO. They are the combo package right now(ECMO & ventilator). Down the road....ECMO stops, then later on ventilators. That is wayyyyy down the road. No big tests or plans today. Dad picked up the twins from Auntie T & uncle James & they had a great time. Happy New year!!! Please pray for consistently high good numbers ♥ Thank you for the prayers ♥