Lucy and I were back to Clinic on Thursday after the longest break ever between hospital or doctor visits ever – a whole month! Our visits to Clinic are down to just once a month, which is the next phase in our ever changing “new normal”. Another positive step! Lucy will need a monthly infusion of an antibiotic to protect her from a type of pneumonia as well as IVIG (an antibody) to help boost her immune system through the winter, due to cold and flu season.
The absence of Lucy’s central line has been pretty awesome, for the most part. Though unexpected, and a little premature, this is another big step that we have been looking forward to. Lucy has been running, climbing and wresting with her sister like a maniac! We can finally let her be a crazy, active toddler. The biggest change that comes with the removal of her central line is no more “fever watch”. The main risk with a central line in place is the risk of infection, which is why a fever meant an automatic trip to the ER and antibiotics.
The only downside to the missing central line occurred on Thursday, and I’d been dreading it … Lucy had to get an IV placed for her monthly infusions. We considered having a port inserted, and even scheduled the surgery. Ultimately we decided that the risks of a central line as well as putting Lucy through two more surgeries (putting it in and taking it out) were not worth it since it would only be needed for about 5 more months. Plus life without it is just too good!
The last time Lucy had to get an IV was several months ago so she and her veins were much smaller, but it did not go well. It took four sticks and two nurses trying to get it in. This time around, I was also afraid that she would rip it out – Lucy knows what she wants (and doesn’t want) and she can not be redirected or distracted. I have to thank God for small blessings, because it went as well as I could have hoped. Nurse Tina was amazing, getting the needle in perfectly on the first try. Luckily she is also very strong because Lucy gave every ounce of her strength in an attempt to yank her hand back before Tina and Brittanie could get it taped down. I was pleasantly surprised that Lucy didn’t pay much attention to her IV hand. It’s amazing what the right snacks and the right movie (Frozen, of course) can do! Then, after some IV Benadryl Lucy napped through a good part of the infusion. The IV was also useful to draw blood for routine labs. Her counts haven’t changed much since last week (ANC was a little lower, actually) which disappointed me a little. We had been told her body would need time to recover and it would take a full year before her immune system would be “normal”, so she really is right on target, but I am anxious about her health with cold and flu season. Plus Lucy is feeling so great and she just wants to play with other kids, so it’s a challenge to keep her safe and entertained. As unpleasant as it is, I know these infusions are very important for her, and it helps me feel like I am doing something when so much is out of my control. With awesome nurses like ours at Glennon, we can do this! One down, four to go!