I feel like we are going in the right direction and I’m so grateful. We met with Demi’s hematologist for the first time today and in one visit, the doctor was able to make this momma so happy with her plan! That’s a great feeling and I think somewhat hard to accomplish concerning my feelings about Demi’s care! I just think I’m extremely particular and thorough so it’s hard to make that happen in just one visit.
The plan is to give Demi injections (neupogen) to help increase her neutrophil count so ultimately we can restart her Toxo meds. She will get that injection 3 times a week for now and I will administer them. Ahh.. I know.. but I can do it! The neupogen will be delivered to me weekly and then I give them to Demi as ordered. The amount of injections needed will change over time. Hopefully she doesn’t dip down again once restarting meds, but if she does, we will revisit the need for changing the dosing neupogen injections. We will be drawing labs on Demi twice a week now verses once. – This has been a big push of mine since it was suggested by the Chicago Doctor a few weeks ago. That’s a huge win for me, for Demi! I get the hesitancy in this.. she is a baby and we are drawing blood.. it’s a heel stick – she does very well… only 0.3 ml are draw each time and we look at her blood counts to be sure she isn’t anemic. So I feel like all concerns are taken care of. It’s a risk vs benefit situation and for Demi it’s more of a benefit to draw more frequently to help manage her care.
Another concern is exposure every time we go in to have the blood drawn. Demi’s hematologist is working on getting us a home health team for at least one blood draw each week along with a weekly weight and head circumference- these are two very important measurements for Demi and prior to this appointment, I have been personally taking them down and keeping up with it. Demi’s meds have to be changed by weight as she gains weight so we should keep a very close eye on her weight.
Her neutrophil count increased some today from her previous level on Tuesday, which is great! That was prior to this injection too! I was happy to see that! However, we still have progress to make in order to restart her toxo meds. The hematologist will be a part of Demi’s treatment for the next year to manage this. Her toxo treatment lasts one year, so that’s why I say the next year. So the hematologist being on Demi’s case is reassuring after such a low dip in her neutrophil count and it staying down so long. It’s been 4 weeks since Demi has been on her meds and it’s so important that she get back on them!
Her neutrophil count being this low for this long puts her a serious risk of getting sick from her own normal bacteria in her body, not to mention outside sources of germs as well. So we will remain in seclusion for a little bit longer. Beau starts pre K 3 Monday so we could use some nice healthy prayers are we continue to navigate this journey!
We will see the hematologist again Monday and Demi’s eye surgeon in Beaumont on Wednesday! Thank you all for your continued prayers!