Two very different ideas in one title, huh? Naomi was crushed that she couldn’t be home for Niamh’s birthday. So at 3am, after Naomi was finished with infusions for the night and finally asleep, I ran to get Lauryn and she and I went to the grocery store and planned a hospital birthday party. We got decorations for Naomi’s hospital room, gifts for Niamh and planned a last minute party.
I was told that the catheter team was supposed to arrive around 9-10am. So I refused to leave the room all day. I remembered how difficult it was to put the catheter into her arm in 2013 and was a bit anxious and wanted to be present.
Naomi, on the other hand, woke with a spurt of energy. Knowing the family was all coming for a birthday party, she organized the room, made her bed, and then we crashed together on the sofa. She fell asleep on my legs for about 2 hours. It was so nice to see her sleep so well being able to bend her arms again. She was definitely more positive today.
The catheter team arrived around 2pm and the procedure started at 2:30pm. It lasted until 4pm because of some complications. The left arm, her arm of choice would not take the catheter all the way to the central vein. It kept bouncing out at her medial line. Since she needs it to go to the central vein, he had to pull it out and try a second attempt on the right arm. On the right arm, the first vein was a miss because she kept moving and there was an artery there. The third attempt was also on the right arm. It was a smaller vein and while it took the catheter it would not dilate fully enough for a double lumen. So a single
lumen was placed and it will likely need to be revised when we get to Wisconsin. It at least goes where it needs to go and then came be revised. It also means that she is no longer needing to be poked for blood draws and worry about where to put an IV.
After the procedure, she had about an hour of pain that she rated 4/10. We iced it for a while. After about an hour, the birthday partiers began to arrive and she quickly forgot about the pain. Our whole family was in the same room for 3 hours tonight. It was lovely… although I’m sure we were pretty loud at some points!
With her ANC still being below 100, we are unsure of our travel plans. It might be too risky to go on Southwest where we have tickets through Children’s Hospital of Wisconsin. But we learned today that Aetna will not pay to air flight her privately, and for us to do some is costly at over $20,000. We continue to hope for a jump in ANC. Ideally she will be at 200 by Sunday.