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!
Love,
-Alli
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8 comments:
Hang in there!! You are doing great! I can't imagine how scary it must be. Especially if you feel like they aren't keeping you completely up to speed. It sounds like you got things figured out though. Thank goodness for wonderful nurses. You guys are all in our thoughts and prayers constantly! (sometimes we forget to bless the food!) We love you!
Cristy
On Sunday I gave a sacrament meeting talk on overcoming trials. I spoke about keeping a good sense of humor. I hope you can find something to laugh about in the midst of all of this. It sounds like it might be hard. Lew and I pray for you all of the time. On another note, I was thinking about your dog and it occurred to me that you might be able to find a foster family for Aspen. You wouldn't have to keep paying for the kennel and you wouldn't have to give her up for good. Your kennel lady might have some ideas. Hang in there!
Scott, Derek and I are constantly praying for you all and hoping that things continue to progress positively! Patience is a virtue, I hear.
Karen,
We do have a lot to laugh at - trust me, a 9 year old with no short term memory provides a lot of humor (either that or you cry...). Two days ago Matt had taken a nap and when he woke up thought it was morning. Even though it was dark outside and dinner was in the oven, Matt woke up and thought it was time for Fruit Loops. Matthew was so helpful, and got Fruit Loops for hit little brothers, as well. Warren just laughed and laughed when he came upstairs and Matt had fed his brothers 'breakfast'. The funniest part was the look on Nate's face. He KNEW he was getting away with something and just gazed guiltily at Warren and continued to eat his cereal.
Also, in the hospital we would frequently look at one another as Matt would start to ask the same questions he asked 5 minutes prior.
"It's Groundhog day.... AGAIN."
:-)
You are doing great! We've been reading along and think you and Warren are doing a great job. Matt is in our prayers as are his parents. Keep your spirits up and let me know if I can help at all. Bob C.
Man, do you sometimes wonder how anything ever gets done in hospitals?
If you get too fed up with Oncology again, ask for Carol Bruggers and tell her you're a friend of "Jessie from the IRB" and to give you "the works" or whatever. (Unless she's the one you're already working with, in that case, hmmm. I don't know what to tell you.)
That is a LOT to worry about as far as care for Matt. Yikes. But you're super smart (can you imagine those parents who aren't smart having to do this? scary thought) Anyway, I know you'll do it just right. You're intuitive, too, so you'll know if anything is off. Hang in there, my friend.
Much love.
Jessie,
Dr. Bruggers is SUPPOSED to be our doctor. She is the Neuro-Oncologist and is the one ultimately in charge of Matt's care, but we've yet to meet her. We keep trying all sorts of sneaky things to try to get in to see her, but to no avail... :-(
Things are getting better, anyway. You sort of get the hang of things and start to understand. It was just so frusterating at the beginning (or maybe we still are at the beginning, I don't know...)
-Alli
I have been reading your blog/notes Alli and just wanted you to know that you are doing a great job. Given the situation many of us would still be in a haze but you and your family are working through this. You are in our thoughts and prayer daily! The hospital circuit is not fun, just latch onto those terrific nurses and doctors that will give you the info you need. by the way... on a somewhat funny note, Luke too broke his arm right above the elbow and into his growth plate just 8/7. He has a bright red cast on his right arm. so please tell Will that his old soccer pal has set out to "copy" him. He fell off and onto a rock in a fire pit (no fire at the time thank the Lord).take care. Shannon (Naperville Hallstrom's)
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