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 ♥