We are back at our apartment tonight and it feels good to all be together at home. This morning it was looking like a slim chance that we would be discharged today. Caleb’s counts were still not up and in fact his platelets had dropped again so our day started off with a platelet transfusion.
Caleb was in a “don’t mess with me” mood. I think he was just over all the vital checks and meds and being cooped up in that room. I wasn’t even mad at him for being cranky. I totally understood.
A little while later the doctors made their rounds and came to talk to me about what I thought about going home. I told them I wanted to do what was best for Caleb, but as far as counts go we are at the lowest part of the cycle where his counts are always low and it could be several more days before they start to recover. They told me they had reviewed Caleb’s files and could tell we were responsible parents so they felt comfortable sending him home on the condition that if he spikes a fever again we bring him in immediately to be admitted again. We also have to continue antibiotics at home through his port. These are called eclipses and we have done them before so I was comfortable saying yes to that. The last condition is that we come in daily for count checks until he recovers. I said yes to all of those things because being in my own bed and our family being together beats all of those things. So, with that, we were out of there!! Since Caleb has been in isolation Caleb had to wear a gown and mask when he left the room, and the nurse had to walk us out through the special isolation exit. It was like getting VIP treatment, but for the wrong reason ha ha!!
When we got home Caleb and I got some rest while daddy and Tyler went to pick out some new T-ball gear. It is time that Tyler has some of his own stuff so he can practice at home.
Tonight we did our 8pm eclipse before bed, and the next one is due at 4am. They come in this little ball that acts like it’s own little pump and dispenses the antibiotics over about 30 minutes. I have blogged before about this process and how important it is that it is done right. Any time you pull the cap off Caleb’s central line he is at the risk for infection. Anything that goes through the port goes straight to his blood stream. It is very important to keep the area clean and not let the end of the line touch anything while it’s open.
Through doing many things at home over the course of the months we’ve been here we have acquired a pretty good amount of medical supplies. James is re-organizing them tonight. So in this pic you’ll see syringes, saline flushes, heparin, his medications, site scrubs, end caps for his port, his emergency seizure medication, and on and on.
We are due back at St. Jude tomorrow at 10am for a blood draw to check his counts. We are hoping he won’t need any sort of transfusion, and that we’ll see his numbers going up instead of down. Now, I am off to get some sleep in my own bed!