Today Matthew went in to have his Broviac placed. Of course, the 1/2 hour procedure took ALL STINKING DAY!!! They wanted us there at 9:30 a.m. and said his surgery would be 60-90 minutes after that. Well, by 12:30 I was beginning to feel a little abandoned so I went to the nurses desk to make sure they remembered we were sitting there. They hadn't forgotten us, but when they called the OR we were scheduled for, they said it would be another hour, at least! Yikes! I'm not irritated that we had to wait - I do understand emergencies, that OR's are always running late etc... However, don't you think it's common courtesy to let a family know their surgery has been pushed back 3 HOURS?!?
So, while I'm feeling rather complain-y, I guess I can go off about Oncology, as well! The transition from the Neurosurgery group to the Oncology group has been a bit rocky, to say the least! We have yet to meet the Neuro-Oncologist that we should be working with. All of our contact with Oncology has consisted of a 5 minute visit (with the Hematologist - which would be great if Matt had Leukemia!) before we were discharged from the hospital (in which the doctor just told us we didn't have a treatment plan as of yet). Then a call on Friday (from the same doctor) telling us our 'plan' and answering a few questions I had. Both conversations together took no more than 10 minutes. So today the Nurse Practitioner who is prepping us for surgery is asking me all sorts of questions about his Broviac, his treatment plan, my training in care of the Broviac, and is HORRIFIED that no one has spoken to us in-depth about what is happening. I mean, this is life altering, scary stuff for parents, and no one has bothered to tell us anything. She got upset and says she is going to call them. She calls and tells them that we need someone to come talk to us. The lady from Oncology gets huffy and tells the Nurse Practitioner that we need to make an appointment! Finally the oncology nurses asks for our name, and when the NP tells her Matt's name she says that we are scheduled to be seen in the Oncology clinic today. Um..... was someone going to let me know about this??? So, while we were waiting for surgery we decided to walk up to oncology. They see us and we get things going. Everything turned out well, but I think they seriously need to work on their new patient transitions!
On a positive note, we had the BEST nurse in oncology (FINALLY) discuss lots of details with us. The scariest parts were related to Matt's blood counts. There are many guidelines to follow that give us signs and symptoms we need to watch for. Here is a site that discusses blood counts and things to watch for in a patient receiving chemotherapy. It's scary to think how susceptible to infection Matt will be when his counts are low. He will need to wear a mask and remain inside with no visitors besides immediate family if his ANC is 500 or below. We also have to be obsessive about keeping sick people away from Matt at all times. If he runs a low-grade fever it means a trip to Primary's and a shot of antibiotic. If the fever is a bit higher, it means admittance to the hospital. Scary stuff!
The nurse also showed me how to take care of Matt's Broviac. I was surprised that I will be in charge of the care - dressing changes, cap changes, and daily saline and heparin flushes. I mean, who do they think we are? Honestly, I can't believe they do surgery to put this thing in your child's body, talk to you for 30 minutes about keeping it clean, schedule a home-health nurse to come assist you, and let you take your child home and expect you to not mess any of this up! It's a bit overwhelming! I'm sure it will become routine, but sheesh, it sure feels foreign right now!
LASTLY (I promise I will end this post soon), they wanted to change Matt's chemotherapy plan. There is a doctor at Duke who did a study on the chemo plan we were going to have. He found that there was a significant increase in allergies to carboplatin, when it was given weekly along with vincristine and temozolomide. Since carboplatin is supposedly the most effective drug for this type of tumor, we really hope to avoid allergic reactions to it! Anyhow, this doctor at Duke recently published a study that showed a once a month chemo regimen in which the entire dose of carboplatin was given (so, 4 times as much as would be given weekly) showed a high success rate, low allergic reaction rate, and lower instance of side effects. Then the tumor is re-evaluated at the 3 month mark to see if it has shrunk or stabilized. I like the idea of less toxicity and fewer chemo medications in my boy. However, I also worry that this treatment is NOT ENOUGH to fight the tumors. I suppose it comes down to the fact that I'm nervous about the treatment no matter what they recommend! We are still anxious for our second opinion to come in. Hopefully they will have all they need to review Matt's case next Tuesday. I am ready to see how they would fight this thing! I hope the two opinions concur (well, that's too much to hope for - I hope they are close to one another). Then we can feel even more confident about his treatments. If they differ drastically, we might contact the doctor at Duke to see if he will give us a THIRD opinion.
Okay, congratulations - you made it to the end!