PICU

I want to preface this post with...

*Atticus WILL NOT take ANY meds for us. None. Ever.

*His head pain and neck pain are constant. He was constantly hurting.

Our week goes a little something like this...

Sunday, May 6th (night): no sleep because we were so anxious about his MRI results Monday morning.

Monday, May 7th: Got MRI results. New tumors vs. Post Radiation syndrome. Started Chemotherapy IV. He tolerated it well. Monday night had his 2nd baseball game.

Tuesday May 8th:  We had a new RN who pushed the meds instead of put them on the IV pump and he vomited everywhere. He got his 2nd round of IV chemotherapy. He tossed and turned all night in pain. His head hurt. His neck hurt. His tummy hurt. ALL NIGHT. He was miserable. We were scared. He would not eat the entire day, aside from a few little bits.

Wednesday, May 9th: Woke up, if you can even say we he went to sleep, very upset, in a lot of pain, and threw up some blood. Mostly rusty color, but with "flourishes" of bright red. So I knew most was old blood but obviously blood is blood and its scary. By this point he hadn't eaten anything in 24 hours and drank very little. I called the doctors and decided he was stable enough to go directly to their office instead of the ER. He got IV fluids along with a bunch of other medications. He did NOT receive chemotherapy. While getting his meds IV he said he felt like he was going to throw up. I could not find anything for him to throw up in so I ran and got the nurses. As soon as we ran back in the room, projectile vomit. I have never seen anything like it. I totally panicked and cried "Marianne, help him!" and burst in to tears. I am usually really good at staying calm under pressure and meltdown away from Atticus, but I was terrified. I regrouped, wen right to his side, rubbed his back then we got him cleaned up. Dr. Goldman came in and we discussed the "game plan." The MRI showed no new growth in the original tumor but enhancements and some pressure on his ventricles that he would like a spinal tap to be the last puzzle piece to really figure out what was going on. Spinal tap was scheduled for Thursday, May 9th at 9:30am.

We got in the car to go home and he started crying that his head hurt. Once home he ate two bites of raisin toast and one bite of yogurt and wanted to go to sleep. He napped for about 2 hours, but was still in a lot of pain when he woke up. The house was completely silent, he was cuddled up on the coach, when he started crying saying, "Isaac your too loud. Your making my head hurt." Isaac wasn't saying anything. None of us were. 

7pm he was ready for bed. Eric got him ready while I put Isaac to bed, then I came down to be with Atticus. It's usually me that sleeps with him, It's been that way for awhile. I don't mind... I love the snuggle time. I told Eric to get some good rest so we could be ready for tomorrow. Wednesday night was a repeat of Tuesday night but worse. He tossed and turned in pain. His neck hurt. His head hurt. But he refused to take any medicine. All night long I rubbed his head and neck but at 3:30am he was beyond miserable. 

Thursday, May 10th 3:45 AM: As mentioned, Atticus WILL NOT take medicine for us any more but I tried to convince him to take something. I tried explaining that medicine will make the hurt go away, to hurry and take it and we can snuggle and go back to bed. At one point I was fighting back tears, begging him, telling him that,  "I love him so much and it makes mommy so sad to see him hurting." I finally got him to take 1 of the 3 chewable Tylenol tablets (it took 20 minutes- I watched each and every minute). Then we decided to take the rest in a syringe like Isaac. I went to the kitchen to get it and when I came back he was laying down crying. 

I picked him up and put him in my lap, when his body stretched out limb to limb and he went completely stiff, then he violently arched his back and stayed that way for what seemed like years. I carried him to the doorway and called our for Eric twice, semi-calm but the third time was pure fear. Eric later told me that my "scream will forever haunt him." When Eric came in, I cried for him to call 911. Atticus was now limp and we could not wake him up. He was completely unresponsive. 

The ambulance came after again, what seemed like years, (Eric assures me it was much much faster) they got oxygen going and said it seems like he is in a "post seizure" condition and got him in the Ambulance. I was able to ride with him in the front passenger seat and Eric followed. My friend Emily came over to be with Isaac. 

While in the ambulance, they got him stable. Atticus wanted to talk to me, so they driver gave me his headset. Atticus and I talked about our trip to Hawaii (totally not planned he just wants to go). We talked about drinking milk from a coconut and swimming with the dolphins. The EMT said, "He's doing fine Mom! His stats are up and good, and he's talking!" I had a moment of, "Did I do the right thing by calling 911, he is talking after all." (little did I know). I called Dr. Lenarsky, who said the same thing the EMT did, sounds like he has a seizure. That I made the right choice by calling 911, that after the ER he will most likely go to the Pediatric ICU (PICU).

We got to the ER (Medical City) but things went from OK to worse. Once off the stretcher and on our way to our  ER room/bed. Atticus blacked out. Once on the bed He started seizing. They were attaching him up to everything imaginable. Asking us a million questions, and giving him a ton of medications. The ER doctor and ICU doctor asked us to step out of the room. They asked us what we knew about Atticus' disease... "We know that he will die from it."  Then, they told us that his heart rate is dangerously low (in the 40's) that he may not recover. That this most likely will take his life, and when his body can't sustain itself, do we want him hooked up to machines or do we want a DNR placed (do not resuscitate). I couldn't answer. I just cried and made Eric answer. Sorry honey.

I fell to the floor. In complete hysterics. We were supposed to have more time. It was too soon. My child is dying. Right now. Today. This minute. Once back on my feet, Eric and I sobbed, holding on to each other as tight as we could.  I couldn't stop crying. Eric had to tell me to get it together. That Atticus needed us. And we needed to be strong. Something clicked.... "Your right," I said, "We can do this." The water works stops instantly and I turned to game mode and we marched back in there. Strong mamma ready to go. I text my family to "Get Here. ASAP."

They took him for a CT and once that was done we headed upstairs to the Pediatric ICU. Atticus still unresponsive. 

I crawled in bed with him and cried; telling Eric, "I just want him to wake up one more time so that I can see his eye's and know that he can hears me say I love him." I held him close. Kissing him. Holding his hand. Rubbing his cheeks. Singing Primary songs. And prayed. Prayed that we would have more time but accepting that He is in Heavenly Father's hands. I held him close and talked with him. Telling him that of course mommy would love more time with him but, if it was his time to go, to do what was best for his body. Do what Heavenly Father was telling him to do. To not be scared. That mommy and daddy would be OK. That we love him so very very much. That he is strong. Brave. Courageous. That he has taught me and so many others so so much. That he is our gift. That I will always love him and always be his mommy.

Our Bishop and Brother Phillips came to help Eric administer a blessing to Atticus. It was a very spiritual tender moment. True intense loved fill the room. My sweet Tori and Jene came, I wasn't wearing my "Angels for Atticus" bracelet (I take it off at night) and wanted to have it on, so they brought it to me. Kelly, a friend and attorney at the same firm came to represent Locke Lord. That Tom (a big time partner) was gathering everyone in the conference room to pray. And sweet Mrs. Cherry came. Each one provided a bit a strength in their own way and we will forever be grateful.

Dr. Goldman came to do his evaluation on Atticus and tears were shed. It wasn't good news. Everyone new this could be it. And probably would be "it." He explained that the CT scan showed an increase in pressure, even from the MRI done last Friday. He did a spinal tap there in the room so they could test the CSF (cerebral spinal fluid).

Atticus was so out of it he hardly flinched when the gave him the lidocaine injection. The way they test and measure the cranial pressure is pretty incredible. They inject a needle connected to a thermometer looking tall tube. The fluid runs up the tube and should be 15-20 (I don't the the measurement). It instantly filled up and overflowed. They filled 2.5 vials plus Dr. Goldman said there was about 5 tablespoons that over flowed on the bed.

He said that Atticus should start feeling much better with some pressure relief. That they will test the CSP fluid and we will go from there.  In the room with us were two other doctors. One of which was the Pediatric Neurosurgeon, Dr. Swift. They were discussing with Eric and I what our options were, as far as pressure relief: shunt vs something else that I cant remember. When not 5 minutes in to our discussion, just five little old minutes after his spinal tap, our child came back to life. He came back to life saying, "Hey! Whose messing with my underpants!" And followed it up with, "Laugh it up Fuzz ball!" I broke down in happy tears. We were given a miracle. Atticus was back. We did not hear another word the doctors said, we just snuggled up close to Atticus and hung on every word he said. NEVER have I been so  happy to hear his voice. NEVER has anything sounded so sweet. NEVER have I been so grateful. I prayed to Heavenly Father to see his eyes just one more time, and I was given not only that, but the miracle of hearing is sweet sweet voice. To hear him crack a joke. SO Atticus. I can just see him in the pre-existence... "Oh!! No one wants to sign up for DIPG huh?! Well, I'll show you! I'll do it! And I'll do it with a vengeance and an awesome sense of humor too!" That is my Atticus. If anything can be done to an extreme, He'll do it. He always has.

Once Eric and I had time with him, we allowed our friends to come in. You could feel the spirit and the happiness that filled the room. Each one of us knew that we were witness to a miracle. Atticus was talking. It was a very very special tender mercy. We hung to every word. His mind was jumping all over the place. From "what should we have for dinner" to "Mooom! we should have gotten a snake" to "Jene, will you feed my fish... not too much, but it's OK if you feed him to much" to "I need a joke to tell the doctors." 

He has had some loss, only time will tell it's true effect. He forgets things very easily. So we have the same conversation a lot. Like, he told me and Eric, "I want pizza for dinner! wait, whats pizza again?" We had to tell him multiple times that Jene fed his fish and to not worry. And he has had to be reminded of a few peoples names. Our hope is that is just do to all the medications. But like I said, time will tell.

Around 12:30pm our family got here. My Mom and sisters. Eric's mom and dad, and my dad later that day. We were so relieved and so very very grateful. Eric and I didn't think they would make it in time. That Atticus would already be gone. And that was the reality of our situation. He was THAT close to leaving us. We have had every possible emotion hit us full force in a matter of hours.

The CSF test results came back. Surprise surprise, more bad news. Atticus has cancer cells in his spinal fluid. Surgery to place a shunt was scheduled for 8am Friday, May 11th. Here is the catch, the shunt will relieve pressure temporarily. It is not a permanent fix. In time the cancer cells will multiply to the point where they will make his CSF so thick it won't be "drain-able." The fluid will become so thick causing the head and neck aches to come back, amongst other things. So either the new cancer cells in his CSF or his original DIPG tumor will take his life. But our days our numbered.  And we are holding on to him and loving on him more that before, if that's even possible. 

Friday, May 11th: Thursday night was... interesting :). He slept sound from 8:30pm-1am (I slept sound 8:30pm-11:30pm) then was up about every hour. Not in pain, thank goodness, but unable to sleep. At 5am I gave up, got him out of bed like he wanted and we raced cars in the hall.

Atticus is no longer able to sit up on his own, and his head is wobbly, so he sat in my lap while Grandpa Jim (who Atticus picked to stay the night with us) raced the cars to us.

At 6:30is we got back in to bed and the two of us crashed. 7:30 the surgeon came and took us downstairs. The anesthesiologist gave us all our "complications/death percentages" and we had to discuss for a 2nd time DNR, "Do not resuscitate." I can honestly say that that is a conversation I hope no one ever has to have.

I'm normally not a pessimist but lately, with are killer odds (no pun intended) I was banking on something happening. And watching him go to the OR without me holding his hand was incredibly hard.

Approximately 90 minutes later, the surgery was complete. And Atticus did GREAT. No complications. Yes, you read it right. NO complications. We went back up to the PICU and waited for them to get him hooked up, then they let me and Eric back in.

He's got one heck of a scar, but looked so sweet with his rosy cheeks. Friday was full of ups and downs. He was VERY emotional and VERY hungry but the poor guy just didn't know what he wanted. What sounded good or what he wanted to do. He was anxious to go home but knew we had to stay. After a few hours post surgery, we "graduated" and got to leave the PICU and head up to the 6th floor, which is where we were when he was first diagnosed. We got a much larger room which is great and it was great to see some familiar nurses. Our favorite nurse, Kammie, said that she had to fight with PICU to get him up here. I guess the PICU RN's said that they had fallen in love with Atticus and wanted him to stay on their floor!!" Kammie said, "You can love him all you want! But he's mine and he's coming upstairs!!" It's great to be a favorite. But really.... whats not to love about Atticus!!  

Friday was a very long day. I'm glad it's over.

Saturday, May 12th: Eric stayed at the hospital Friday night and I went home, (I didn't want to, but was forced to). I crashed the second my head hit the pillow and slept sound 9pm-3am. From then on, I tossed an turned and fought back negative thoughts and tears. I got a text from Eric a little after 5am stating that Atticus was hungry. I jumped in the shower and hit the road. Got to the hospital around 6 with a variety of breakfast sandwiches from McDonald's and a variety of donuts. Atticus was in pretty rough shape. Eric said the night went "OK." That shortly after Atticus went to bed he woke up flipping out that his neck hurt. After pain meds he slept about 4 hours but woke up because he was hungry and his tummy hurt. He gave him a snack and went back to bed until 5 am. I don't think Eric slept at all. In fact I know he didn't because I had two nurses tell me,  "make sure Daddy gets some rest today!" Can I just say, I LOVE our nurses. They take such good care of us. 

After the Neurosurgeon did his assessment and Dr. Weihnthal did his assessment. I sent Eric home with strict instructions to sleep! 


So here's the update...
1. Atticus' little lapse in memory was just meds. He's back to normal!!
2. We hopefully get to come home tomorrow (Sunday May 13th... Happy Mother's Day all!!)
3. Since he will not take medications orally, he will stay accessed and we will have home health/hospice come to the house to either administer his IV meds or teach me how and change his port needle once a week.
4. The sad news, although Atticus has gained some strength back, he cannot walk, sit up on his own, and his head is still a little wobbly.  He will be going home in a wheel chair.

Like I said, we are hoping to go home tomorrow but Monday for sure. We are all ready. I think its safe to say that we have been to Hell and back. The "Back" has been absolutely amazing. We truly were witnesses to a miracle and we are so so grateful for a loving Heavenly Father and for the many many prayers said in our behalf but, and I say this not to get pity, or to be dramatic, but to be realistic... Our days are numbered. Atticus is in pain. His poor little body is suffering.  We got a taste of death this week, and it is very very bitter. We pray Heavenly Father continues to pour his comfort and peace over him and our family. It is His will not ours. We will do what is best for our Atticus, even if it means more heart ache for us. 

Thank you for reading this. It means so much to me. To know that people care about our family but more importantly care about our Atticus. That people are concerned with how he is doing, what he is doing, and what our next plan will be. To our friends and family, we love you. We couldn't do this without you. To our "Strangers that are now Friends" we love you too and are so incredibly grateful for your continued support. Atticus is changing all of our lives forever. This little 4 year old has more courage than I ever thought possible.

*Im sure there are tons of spelling and grammar errors, I just don't want to go over it again. So, thanks for over looking them.

Getting out of the ambulance... He wasn't alert much longer.

 

My sweet baby. We were in the PICU and He and I just had a "talk."

 

Our miracle boy!

 

Eric's eye's say so much... it was a rough day.

 

Playing Candy Land with the fam!

 

Our 5am wagon ride...

 

Racing cars...

 

 

We had awesome nurses in the PICU.. This was Kacey.

 

Heading to the OR..

 

His scar...

 

Thankfully, he likes the wheel chair.

His rosy steroid cheeks are back!

Our trip to the play room.

He wanted to build a train track, so he would tell us which piece he wanted and we would put it together. The poor guy got frustarted shortly after, not being able to move around has been hard on him as you can imagine. 

 

 

We are so so grateful for our many "Angels for Atticus."

**I just ordered more bands so if you need/want some, shoot me an email.

My sweet sisters... I love them so much.

 

Pop Pop and Isaac. I miss him. It's hard being away from him so much. Hard to keep a balance between the two boys. Don't forget who your mommy is buddy boy! I'll be home soon. xoxo

Nap time!

This kid has been through so much, but no matter what comes his way, he's ready with a joke and a smile.

More Candy Land!

 

He is so ready and anxious to get home! Fingers crossed it happens tomorrow! Hang in there buddy.