Life update: Sorrow, joy, and everything in between.

Elf ornament and card that says Neighbor

 

 

I am near tears as I write this. My baby boy had his last chemo today…well, his possibly last chemo. At least his last full-body toxins chemo. Then because it was his last, they took the central like out. They took the tube hanging out his chest. FOR GOOD. No more daily flushes, no more bi-weekly blood draws and carrying vials of blood around in my purse, no more worrying about him pulling it out, no more fear of infections… It’s over. 98% of our at home medical maintenance care is done.

I took all his medical supplies off the shelf in our living room and replaced it with Christmas presents.

Today’s last minute chemo, removal of foreign object from my son’s body, and homecoming, are joyous developments.

Joyous end to possibly the hardest week of our life. Certainly the hardest week since my husband I have been married.

It started on Thanksgiving...

It was a good thing that I wasn’t into Thanksgiving this year. After a pleasant morning at communion at church, we did our usual Thursday routine to drop off the baby’s blood draw, and then went to my dad’s house. As we arrived there my dad noticed the baby was feeling a little warm. Since he was bundled up in pajama’s and blankets, I freed him of his cuddles and the poor boy started shivering. His temp went from 99.5-102.5 degrees in a hour.

Off to the ER we went.

We found out he had pneumonia and a possible infection. They admitted us to the hospital while we waited for the blood culture results which would take 24-72 hours. That was Thursday. Then Friday no news, just more fever…Then by Saturday I decided to go home for the night. My dad came to the hospital to stay with the baby.

When my husband, daughter, and I went home. On the door we found a note from the corners office. We found out that night that my father-in-law passed away in a car accident earlier in the day.

Shock, sorrow, and more shock ensued. 

Sunday morning I got back to the hospital first thing in the morning, to find out that the baby did have an infection. A staph infection to be specific. It meant at least a week of antibiotics and hospital stay.

I went home Sunday night to be my husband, and then came back Monday morning to find my baby on isolation…

It turns out that a thing called c-diff is making is way around. It’s a terrible diarrhea thing that can do permanent damage to your guts. They decided he had some of the symptoms, and while they tested him, they had to treat him as if he had it. “Contact plus” isolation they called it. It didn’t turn him into a bubble boy but people did have to wear plastic gowns in the room. Not bad, but still on the scary side of things.

At that point I was numb. On top of grief, we were knee deep in figuring out arrangements for my father-in-law, and now not only did I have to worry about my chemo-riddled son who had pneumonia and a infection, now a contagious disease? Oh, and my daughter had food poisoning at some point during all this crazy. 

But there was a lot of good…comfort. We had been to the hospital so often, I had a lot of friends who cared. Who were there to take care of my son but were there for the rest of my family. Someone stepped up and helped us with costs. More people stepped up and signed up to bring us dinners for a whole week. We got lots of love and encouragement.

I made my first Love the Hospital{ity} project donation to the hospital. The child life specialists (and myself) were blown away by people’s support.

I even played secret Santa with a teenage girl two rooms down. I noticed she had been there for a couple of days with two broken legs. She had a great black pillow with with flowers on it. She always looked sad or bored. When I found some fantastic glitter nail polish in the gift shop, I passed it along to her nurse. Then later I found a really adorable elf ornament in my son’s room with a thank you note addressed to “Neighbor”. Her name was Mia. It was a small interaction but for some reason I have a feeling that I will never forget her. 

Then like always, the next day came… and the next day. By Wednesday we found out that we can take the line out, and that we were going to move ahead with the last round of chemo (it was originally scheduled for Tuesday and Wednesday). Today, Friday, I found out that we would be going home today. 

It was a relief. Something to celebrate. 

What started as the worst week ever, ended good. Not only were we out of the hospital but progress was actually made. Progress that would change our day to day life for the better. Progress that just fuels our hope for our son’s healing and health. A step in the right direction. It may be only a step, but that’s worth celebrating.

Tonight my husband and I ended up exchanging Christmas gifts early, to commemorate this time. (My fantastic husband got me the book The Bully Pulpit by Doris Goodwin because he is awesome to fuel my Taft obsession). 

Then something with my father-in-law came up… 

It was kind of distinctive of the week. Up’s and down’s all over the place. We are cherishing the up’s and working through the downs.

That’s my life this week. 

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2 thoughts on “Life update: Sorrow, joy, and everything in between.

  1. Soo happy to hear you are home and able to tuck away the medical supplies! I’m so sorry for all you’ve had to endure this week. But God is good and He will lead you through!

  2. You are so strong and your angel baby so brave. I commend you because through all these downs you have been positive, God wouldnt have ket you go through all these tests if He knew you wouldnt have been able to handle it. Much love and respect Abieda

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