Joy will come in the morning

What a fighter. My hero

So much has happened in these past weeks that I am not even sure where to start typing. Christian has endured so much in these past two weeks and Chris and I have been on a never ending emotional roller coaster ride. I find myself continually asking people what day of the week it is, what month are we in and what is going on in the world outside the hospital? We have been sucked into the vortex of the Children’s hospital and I fear we will remain spinning here for the next few months.

After one miserable but valiant fight by Christian to rid his breathing tube we had to refocus ourselves and Christian to spend a few extra days in the ICU as the Dr’s prepared him for his next extubation attempt.  He began taking steroids to decrease any swelling in his throat and enzymes to help break down all the fluid in his lungs. The day of the second attempt they had every bell and whistle available in case something went wrong with this attempt. They even had a surgeon put a camera down his nose and into his throat to check and see if there was any residual swelling or pressure on his airway. Long story still long the tube came out effortlessly and Christian just began breathing without any effort at all – not even a cough. Wow.

Party in Room 1109! 

Chris and I were super excited and proud of Christian and we thought that we were well on our way to getting him out of the hospital. Well four short hours later I returned to the ICU, after taking a short break to visit with Evelyn and Ryan, to find Christian in a state of mental disarray. They had ‘forgotten’ to mention to Chris and I that Christian would end up suffering from some serious withdrawal due to all of the medications he had been given to sedate him and treat his pain. During the week we spent in the ICU the doctors continually emphasized how many drugs Christian was ‘chewing up’ in order to keep him sedated. We thought –“that’s our little fighter, nothing is going to keep him down”. Ok so here we are now looking at Christian making weird facial expressions, jerky body movements and looking very much like the lights were on but nobody was home. As the hours waged on he got worse and we were resigned to hand restrains and leaving him in the room alone since he couldn’t tell me from a hole in the wall. It was so sad and we both wondered if he had suffered some permanent brain damage somehow. They continued to reassure us that this was normal and he would have to go through some withdrawal symptoms in order to ride his body of these toxins. So our exhilaration about being extubated was quickly trumped and sadness filled my heart for his new state of being. Unable to focus on objects or faces, unable to show emotion or to speak words, unable to control his body movements – I was certain that he was going to be like this forever.

I had to have a little chuckle to myself thinking back to our pre-surgery meeting with his surgeons when they said that Christian might have to stay in the ICU and be intubated for up to 48 hours after his surgery. Move ahead 7 days or 168 hours later and Christian was finally breathing tube ‘free’ and leaving the ICU for unit 1 – our temporary home away from home. We were so nervous about leaving the ICU, where they are SO good about immediately attending to any of Christian’s needs, with him not in his true frame of mind or body. And true to our fears we had a horrible first night which Christian spent every minute of awake and jerking around. I couldn’t help but think this poor little man has fought so hard, battled cancer and chemotherapy, a 12 hour surgery, 7 days with a tube down his nose and throat and now he has to be tied down to his bed so he doesn’t pull out his multiple lines and drains. I cried and cried in the hallways wondering how this could possibly get any worse for Christian.  Thankfully we had an amazing nurse that morning who immediately got things going for Christian and got him the medicine he needed to calm him down and help him sleep and the doctors who could help him with his withdrawal. Fast forward three days and Christian is doing so much better. They have done a good job of formulating a plan to slowly wean his body off the narcotics and he is finally coming around. I never thought I would be so happy to hear him call me mom or finally see a genuine smile. Ecstatic to hear him speak a full sentence and ask for more toys and some food. A true call of reality for the small things that we all take for granted each day. The ability to communicate and receive love from our kids. The chance to hold them tight in our arms and have them reciprocate our love and cuddles. 

Loving grammy's leg massage

Watching baseball with grandpa

So this is where we are right now. In the unit waiting for his full faculties to recover, waiting for his withdrawal symptoms to fade away, waiting for his body to heal, and waiting for his next round of chemotherapy to begin. I am sitting here in our 'suite' - quiet and away from the rest of the unit so Christian can have some peace. I am listening to his sounds of withdrawal return and I take a break from typing to go and get his nurse. Another night and another round of withdrawal drugs. 

Kisses and cuddles - have you given yours today?

The preliminary results from the lab showed the his tumor was encased in a very solid and thick case. They found no tumor cells outside of what they removed from his body. However the cells from the tumor they took out did show that the tumor had grown and developed a resistance to the chemotherapy treatment he was receiving. We have yet to have a meeting with our oncologist but we are very aware of the implications of tumor regression. He will definatley need a course of high dose chemotherapy and a stem cell transplant in order to ‘wash’ his body of any cancer cells. So let the prayers begin now that Christian will have full healing and recovery from this next round of intense chemotherapy. We will be spending the next 2-3 months in the hospital with Christian while he completes his treatment and deals with the negative side effects of the intense chemo. 

The peace of uncle Peder

We continue to have hope and praise God for all the gifts we are given. He has lead us through these trials and we have been victorious – Christian has been triumphant in every stumbling block put in his path. God has hoisted Christian high on his shoulders and will carry us through. A good friend of the family came and visited the hospital this past weekend and shared some passages for me to focus on, this one has stayed with me,

“Weeping may endure for a night but joy comes in the morning”

Psalms 30:5

Uncle Ian making a surprise visit from Ontario

Today I am thankful for:

1.     Unit 1 nurses who go the extra mile

2.     Hearing Christian say, “I’m hungry”

3.     Christmas movies – yes its that time of year again