April 9-10, 2015

Hi Everyone! Sorry it’s been a couple of days since I’ve posted, but I’ve been a bit cranky. I just want to say thanks to everyone who has purchased a t-shirt or donated money!!!! I can’t believe how many people are in my corner!!! I can’t wait to see everyone’s t-shirt pictures! I think that is so cool.

I’m going to turn this post over to Mommy though, I am really sleepy…

Just as Bodi mentioned, Bryan and I are humbled by everyone’s generosity. We are so honored by everyone who is praying for our little man. The past two days have been a little touchy. Bodi and I had a long Wednesday night as we were trying to figure out what amount of milk would work for his tiny belly. I was up until 4:30 am trying to keep up with the feeding tube. Then Bodi wanted more at 7:30. After that feed it was time for rounds. The doctor’s mentioned his white blood cell count was up to 3…which is basically 0. He was still really congested and coughing a lot. With everything going on with Bodi, the doctors decided not to discharge him anytime soon. I was relieved to hear that because I find that having nurses and doctors right outside your room is really comforting!!!

Bryan and I received instructions on how to clean Bodi’s PICC line once we get home. We were both able to practice on one before we “completed” the course. I am still a little anxious thinking about doing this without supervision, but I will get the hang of it!

After the in home care nurse left, we could tell Bodi was in pain. The nurse administered pain meds and he calmed down and fell asleep. I went down to have lunch with my sister and by the time I came back upstairs I could barely see straight. I fell asleep as soon as I got to the room; luckily little man was still sleeping!!!

Uncle Matt came later that night and we decided to give Bodi a little exercise. We put the floor mat down and his activity gym over him. He loved it!!! He kicked, cooed and smiled at us. What a nice change from earlier in the day!!! Uncle Matt finally got to hold Bodi. Of course it was a photo op!!! After he left, we put Bodi to bed and he slept pretty well, waking for the normal feeds.

Friday

Bodi woke up in a rather good mood on Friday morning. During rounds, Bodi and I sat in the recliner and had a little chat. I told him how proud I am of him and how much I love him. After a few big smiles and coo’s I got a big surprise. He decided to puke all over me!! I screamed for the nurse who came rushing in. This was a big deal for me because Bodi had never puked before and he doesn’t spit up at all. My mind was racing. Was he sick from the chemo, were we feeding him too much from the tube, did he get sick from someone? Turns out his belly isn’t big enough for the 40 mL and hour of formula he was receiving, and the formula was probably a little harsh on his tummy. (I wasn’t producing enough milk for the volume they were trying to give him).

After we calmed down and he fell asleep, the doctor peeked her head in the door and said they ordered a chest x-ray to rule out anything else in his lungs. Ok I thought, great! We’ll get to see if the tumor has shrunk any. No problem!

As they wheeled us down to get the x-ray my mind was racing…what else were they ruling out? I asked Bryan what he thought and he said, “I’m sure they want to make sure it hasn’t spread”. I immediately burst into tears. How had I not thought of that? A wave of anxiety laced with terror spread over me. I had to hold Bodi’s legs down while Bryan held his arms as he is screaming. I’m crying, Bodi’s crying, Bryan’s crying. Not a fun experience. They wheeled us back up to the room, where we waited anxiously for the doctor to come in. As we waited, the nurses had to change his PICC dressing because he soaked it with vomit. I decided to take a shower as I still had vomit on me from earlier. As I was having a breakdown in the shower I could hear Bodi screaming. I pulled myself together, grabbed a mask and rushed out. He was laying in his crib with 3 nurses and Bryan attending to him. I squeezed in and held his hand and rubbed his head as they were changing and sterilizing the dressing. He just looked at me as if to say why are you letting them do this. I couldn’t keep it together. I was crying, the nurse who was holding his legs was crying. It was heartbreaking. It was finally over and I scooped him up and Bryan, Bodi and I just hugged. He finally calmed down.

There is nothing worse then the inability to help your child. It is heartbreaking to see him in pain. After all of the trauma from the morning the doctor came in. I held my breath and he could tell I was anxious. The words, “the x-ray was clear” were the most wonderful words I had ever heard. A load of bricks was lifted and a wave of relief washed over me. The doctors wanted to make sure he didn’t have pneumonia.

Bodi had a good rest of the day until later that night. He became very fussy and we had to give him pain medicine. We hooked him back up to the feeding tube and just lowered the amount of liquid and mixed it with breast milk. Bodi slept like a champ last night, as did I! Poor little man was exhausted after such a long day.

I just want to take a second to say Thank you to everyone who has written on Facebook, sent me private messages, text messages, voicemails, etc. If I don’t respond to you, just know I read every single word and appreciate the kind thoughts. Bryan and I are completely humbled by the love and support of our friends and family.