Today was by far one of the longest, hardest days of our Leukemia journey.
Monday we went in to get labs, and chemo. His counts were really good 1400 or so. He was really good while he sat (for the most part) and got infused with chemo, which takes about an hour and a half.
Since his counts were so great we got the go ahead to get his port today. We were told to arrive at 7am since Ezra was the first scheduled case of the day. I awoke at 6am we left at 6:30, and were at Shands by seven. Its eight now, and I go and ask how much longer it should be, Ezra is getting restless and is hungry since he couldn’t eat or drink this morning.
I am told that there was an emergency with a newborn that needed surgery. I am told it shouldn’t be much longer. I realize these things happen, and I wasn’t upset, just annoyed because I had a hungry, angry toddler on my hand.
We finally got out of the waiting room at 9:30 and taken to pre-op. I am so happy because Ezra and I are falling apart. We get to pre-op and the pediatric surgeon comes by and tells me that there is another baby that is trying really hard to die. Well what do you say to that! So we waited some more.
They gave Ezra some baby Valium (versed) which worked for about an hour, after that…about 11 or so, him and I are both in tears. All patience is gone. Ezra is finally taken back at 12:30, only 5.5 hours after our scheduled appointment.
Ezra is taken away in tears, I leave and duck into a bathroom and cry myself.
The procedure didn’t take more then 2 hours, he got his new port, a lumbar puncture with chemo, and a bone marrow aspiration.
I am called back after he gets out, and I sit with him until he wakes up…which he never really does. He wakes up long enough to drink some juice and get Ted.
He just keeps sleeping, he has missed nap time, and had a really long awful day. We sit him up to start unhooking him from everything and he pukes all over himself and me.
Well, ok I can handle that, we are going home right? Wrong. Not so smart nurse forgot to order an x-ray for Ez, so we had to wait even longer for an x-ray and for a Dr. to check the x-ray out. It looks great. We are on our way.
Only to get stuck for 30 minutes in the Shands parking ramp, at this point, I just surrender and cry. Luckily Ezra is still sleeping.
We didn’t get home until 4:30pm. Ezra has thrown up at least 4 more times…on the carpet since being home. Luckily its mostly juice. I am still going to have to clean the carpet. I really need wood or tile floors.
The chemo has never made Ezra throw up before, so that was a new “fun” thing for us. I think it had something to do with him getting more anesthesia than he usually does.
He looks more sick then he ever has from the chemo also. Its hard to see.
But, we have a port (yeah!), and we got rid of the damn PICC line.
9 hours at the hospital with a 2 year old = no fun, no fun at all.
I will be in bed shortly…..