Wednesday Day -9
The day we have been waiting for, praying for, stressing over, and dreading..
We didnt have to show up to Unit 1 until 8pm so we made the most of our last day of freedom. In the morning we took Emerson for a quick hike in the Paskapoo Slopes near our home. We came home for lunch and a nap. Then we took Emerson to the park to enjoy the slides and tire swing. We loaded our bags into the car and made the trip to our new "home". We were greeted on Unit 1 by his nurse who did a quick assessment. Then we were left on our own for a while to unpack and get E settled in. He made his way to the door and won over the hearts of all the nurses on the Unit with his contagious smile. Such a little heartbreaker already. Throughout the night they gave him another dose of IV antibiotics and an antiemetic drug to prepare him for the next day of chemo. Emerson slept awful the first night. I think he was unsure of his surroundings and kept thinking he had visitors coming in to play.
Thursday Day -8
Emerson woke up at his usual time smiling and ready to start the day. He was very good natured and active. It is extremely hard to keep him occupied and happy in our room. He was given his first dose of chemotherapy around 2pm. The drug that he received was a subcutaneous injection (much like a vaccine poke). He's now also on a new anti fungal through his central line, a drug to prevent liver damage, and an antiemetic drug. He tolerated the first dose of chemo well. He went down for a nap shortly after and woke up in a decent mood. We played for a bit and then had supper. He was extremely hard to get down to sleep at bedtime and partied until 10pm. I didn't realize how hard it was going to be to see him get the chemo for the first time. The nurse came in wearing a crinkly blue gown to protect herself and told us from now on we have to protect ourselves too when changing his diaper. It blows my mind that we can be injecting something so toxic and vile into my poor little baby.. Throughout the day I noticed many other nurses in the blue gowns going into other rooms and my heart weighed heavy. The thought that every little babe in this unit is as sick or sicker then my little guy is unbearable. I am overwhelmed with sadness thinking about all the other families going through this. I had a talk with another momma who's little one also has SCID and has already undergone chemo. She told me I have to stop thinking of it it in such a negative way. She said, its not "poison" its a "life saving regime". It helped a lot to hear that and Im trying to think of it more positively, but its really really hard.
Emerson has also developed horrible diarrhea. Stool cultures have been sent to rule out a new source of infection. The most likely cause is one of his new medications (3 of them can cause diarrhea). We've been going through 8 sleepers throughout the day.. poor little buddy.
Friday Day -7
Emerson was his cheerful self when he woke up. He was pretty happy throughout the day but we've noticed he's started to be fairly moody from some of the medications he's on. He goes from super happy to full out throw himself on the ground tantrum in the blink of an eye. He had his second dose of the same chemo drug around the same time. He napped after and woke up in a bad mood. I could tell something was wrong but couldn't find what he wanted. He started to wail as if he was in pain. I was frantically trying to find out what was wrong and asking the nurse if there was anything we could give him. While she was seeing if he could have another dose of tylenol he finally gave in and started taking his bottle.. I still don't know if he was just hungry (Id tried to give him his bottle prior to him finally taking it) or if he was in pain and decided to sooth himself with his bottle.. I broke down. It was the absolute worse feeling thinking he was in pain (that we caused) and we couldn't do anything about it. I cannot wait for this to be over.. the sad part is we haven't even started the "hard" drugs.
We got Emerson settled and he seemed to be in better spirits after his bottle. He was still extremely moody but at least he wasn't crying. As I was sneaking out of the unit the code bell rang. Swarms of staff flooded into the room and I could hear them shouting for the emergency equipment.. Again I broke.. That poor family.. thats poor baby. No one should have to go through this.
Emerson received his first dose of Ativan (to prevent seizures that another medication we're giving him can cause) at 8pm. In 99% of kids it relaxes them and makes them sleepy. Well, not for Emerson. He was wired- bouncing off the wall wired. He stayed up until almost 11pm. I hope it was a one time thing!
Saturday Day -6
Emerson woke up in a great mood and had a bit of breakfast with JP. They began giving him more fluids and have talked to us about maybe starting a stool replacement because he's been having so much diarrhea. Today the plan is to put in his foley catheter (protects his bum from the nasty chemo drugs) and to start the worst of the chemo drugs later in the evening. I hope he tolerates it well and if not I hope we can better manage his pain.
Please pray for my little guy as he goes through this great battle. Thank you to everyone for the words of encouragement, they are greatly appreciated.
xo, D
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