Yesterday

Yesterday was hard.

Yesterday I struggled with many things.

For the first time, since surgery I felt….

Mad
Hurt
Doubt
Upset
Fearful
Scared
Jealous
Worried
Stressed
Confused

I didn’t know where to turn. I didn’t know what to think. I didn’t know what to feel. I didn’t know if I could be strong. I didn’t even know if I could pray.

I know that everyone has hard days, but yesterday was one of the hardest since being home from post-op.

The buildup for this day all started a little over a week ago. Cannon’s scalp was getting really dried out, with little red bumps and itchy. I called the orthotist who is our “helmet lady” and asked for advice. She recommended that I needed to stop washing his hair daily and needed to get some moisturizing shampoo. I told her at the time I just did not think it would be possible for me to go to every other day washes as by the end of one day his sweet baby head is smelly and gross from being in his helmet all night and day with no break. So she said I could try the moisturizing shampoo daily for the time being but if sores began to break out on his head then we would have no other choice. I got moisturizing shampoo. I continued washing his head daily with the new shampoo but then Tuesday night I noticed two sores on the back of Cannon’s neck. The sores were firey red, swollen and looked painful, almost like burns about the size and width of my thumb. The orthotist had talked about these sores and had said if he got them then he would not be able to wear his helmet until the sores completely healed due to the worry of infection and rubbing the skin raw. This situation would not be good as he MUST wear the helmet 23 hours a day in order for all that we have gone through to be successful. So late at night, what was I to do? I followed her previous advice, put Neosporin on both spots, took pictures to send to her and then put Cannon to bed without his helmet?!?!

I stressed.


I  did not sleep well as I knew that we might potentially have to return to KC for helmet adjustments the next day. On top of this, Chase’s back was in no condition to drive or ride the trip up and back. Add to that, our beloved Zoe dog was sick.

The moment Cannon’s orthotist’s office opened, I called. I had to leave a message and then waited. I waited for what seemed like forever as I was sure that I would need to endure the six hour round trip in a day. However, I spoke with the orthotist and she determined that indeed Cannon’s sores were bad, but she hoped to get us by until our scheduled appointment this coming Wednesday. Also, at this point I had no choice, I had to cut back on washing his head daily. She gave me detailed instructions on how to treat to sores and then told me the dreaded news that Cannon had to be out of the helmet for a total of two days and two nights. Any time he laid down I had to ensure that he was flat on his back and no turning of his head to one side or the other occurred. We then would have to restart helmet therapy on the third day but would have to go to a weaning in schedule and see how the sores reacted. Then at the very end of the conversation she noted that in the pictures it looked as if Cannon’s neck was swollen. She asked how his lymph nodes were doing and I told her that they were same, still inflamed. She said that she thought it was time to return to our pediatrician to have our pediatrician recheck the lymph nodes as the combination of his neck being swollen, the inflamed lymph nodes and the red sores were worrisome.

I wanted to scream.

Instead, I loaded Zoe and Chandler in the car to go to the vet’s office as our little Zoe dog was not getting better. On the way to the vet’s office I called Cannon’s pediatrician, scheduled an appointment for the next morning and set off to continue our day, but suddenly the dreadful pit in my stomach returned.

I prayed.

Zoe received a shot of antibiotics, instructions to not feed her for a full 24 hours and return the next day.

We had an uneventful afternoon and evening. Cannon’s sores looked to be getting better. But then, there was yesterday, Thursday.

Our morning started out calm and peaceful. I took Cannon in and was prepared to hear the same thing as last time about his lymph nodes. They just needed time. Time to heal, time to go down, time. The doctor entered and I pulled Cannon out of his carrier. As I did, I noticed on the right tip of his back incision had a sore full of fluid and grossness. This was the first I had seen it. This was the first I noticed it. What? The doctor noticed it immediately. I went from calm to stress. I looked closer as she continued talking and heard the word “infection”. NO! This couldn’t be. We were almost five weeks post-op. His incisions had looked amazing. I had been meticulous in keeping his incisions clean and cared for. She drained and swabbed the sore and then prescribed an antibacterial cream to apply to the spot. She discussed the possibilities of the infection and then went on to reiterate that she thought his lymph nodes probably just needed time. I was seriously stricken with panic about the new discovery. I asked about the dry skin. She made her recommendations and then we were on our way.

I felt in a rush again the inability to be strong with this new revelation.

We left. I returned home to get Zoe to take her back to the vet and all the while Chase’s back was so bad that it was all he could manage to stagger from chair to the floor with ice on his back and a continuous round of Tylenol flowing through his system. While on the way to the vet I called the orthotist, the surgeon’s nurse, the surgery clinic, a cranio mom who also has endured a great deal and my mom. It was all I could do to keep my composure. The thought of all that was to come crashing down was imminent and I was not strong.

I was broken.

Zoe’s news was the same. Still a temp. Still no food. Another antibiotic shot. Antibiotic pills for home and the need to call back to the vet with updates as the possibility that she could get worse before getting better was a concern.

On the drive home. I cried. Hadn’t Cannon endured enough? Hadn’t I been through enough? Hadn’t I proven that trusted? And then the onslaught of emotions hit me. I was mad. So mad, this shouldn’t be. I was hurt. I had trusted in God to get us through this. I was upset. I should have noticed this before now, before today. I was confused. I took this new situation on that it was something I had done that had caused this, but what because I had been so careful. I had done my best. I was fearful. What if this was the start of something worse? I was at a loss. I didn’t know what to do. And yet the day had barely started.

With at least ten phone calls later, several from all of the previously listed people and instructions or advice that was so very different it made everything so confusing and so inconclusive. My ability to be strong was quickly diminishing.
I was exhausted. All day the confusing thoughts were rampaging through my mind, blaming myself, being angry, being mad, so mad. I told my mom about a sermon I had heard while pregnant and how I was so fearful that all of this was my doing. I had prayed while pregnant for God to make me strong and the sermon given by a guest speaker I heard was about that if you pray for patience then God would put people in your life to test your patience and if you prayed for strength then God would give you situations to test your strength.

I was scared.

Maybe there was more that we would have to endure. Maybe because I prayed for strength God had placed this situation into our lives to test our strength. I was heartbroken.
I spent the afternoon trying to just breathe. At one point when we were told that Cannon would have to be out of the helmet for two days I was actually looking forward to finally getting to spend time without the helmet as we really have to come to see it as a part of Cannon. But then there was this. This possibility of an infection took away from our excitement. The afternoon was full of calls back and forth to the pediatrician’s office, surgeon’s office and the orthotist. All to finalize advice, instructions, prescriptions and follow-up appointments.
As I drove to Target to pick up the prescriptions, new shampoo and lotion I begged and pleaded with God. Maybe there was still the possibility that Cannon’s incision site was not infected, maybe I could be hopeful again. But, as I again thought about being hopeful I wanted to cry as throughout this all I would always feel hopeful only to have reality hurt. Then an all consuming exhaustion hit me hard. As I discussed everything with the pharmacist she again shared her opinion about how to cleanse the incisions as through all of this even though I was not to wash Cannon’s head I needed to still daily wash the incisions, even though the poor incisions were perhaps the driest part of his scalp. It was here though, that as I walked to the baby department and saw the beautiful pictures on the aisle walls with precious babies, babies with their mommy and they were perfect. They didn’t have helmets. They didn’t have incisions. They didn’t have scars. It was here that the jealousy started. I was scared of this emotion as I know how fast and dangerous this emotion can be. I didn’t want to be jealous but I couldn’t help my heart. Again, it suddenly seemed as though I was encompassed by babies, all of them with perfect head shapes. Not needing surgery to fix their heads, not needing to wear a helmet to be made whole, not needing to worry about incisions or infections. It was here that my doubt again started. I started doubting my ability to fix this.
I was hurt.

I was scared.

I was mad.

I was worried.

I was confused.

I was jealous.

As I was then waiting in line to get dinner I saw her. A lady who I did not know but her shirt touched my heart and made me realize everyone has hurts. Her shirt said “A Blood Donor Saved My Life.” I still left feeling pain in my heart and I returned home and told Chase that today was a hard day.

I cried.

I shared with him all the thoughts that wouldn’t stop. But finally, he stopped me and reminded me that I had and have done my best and that is truly all I can, could and will ever be able to do.
So yes, I know everyone has hard days but I do ask for your thoughts and prayers for my sweet Cannon. The thought that an incision that was needed is now infected and so close to his brain and will not get to have “air” as he is now back in his helmet scares me but again I have to believe that surely the doctors know what is best. I pray for strength to be strong enough for my family and Cannon. I pray that my heart can calm and that the peace that I once felt so strongly can return. I pray that I have faith to know that God is in control and He loves our Cannon so much and He will protect him.