Saturday, May 31, 2008

Alli's 'Mama bear' instinct kicks in!

Friday morning, Matt was still terribly exhausted and not eating anything. I called Oncology first thing Friday morning and by Friday afternoon things had been arranged for us to receive supplies (more fluids and anti-nausea meds), and a home health nurse had been assigned to come draw more labs - a BMP (electrolytes). I sort of felt like all this was done to appease me. No one said or did anything to make me feel this way, I suppose, but Matt is on chemotherapy and how did I expect him to feel? Well, the BMP checks sodium, and his sodium was extremely low. That pesky sodium again! Low sodium is a new problem. Usually Matt's problem is high sodium. Oncology called Endocrinology and his Endo. doctor wanted Matt admitted (at Primary's) right away to get him stabilized.
Thankfully, by withholding his DDAVP for one night and not pushing fluids, he was stable by this afternoon. I am upset about several things, though.

1) I am grumpy at myself for not pushing harder when I 'felt' like
something was off. This is the biggest one. My friend Karen encouraged me to push to have him seen. I am always worried, though, about being 'that' parent who thinks she's a doctor and overreacts to things like (gasp) a child feeling crummy while on chemotherapy!

2) I am grumpy at Hem/Onc for not recognizing that in a child with DI
a BMP should be ordered right away if the child is not eating or
drinking and has these types of symptoms.

3) I am grumpy that Hem/Onc isn't familiar enough with my child's
case to catch this - I feel a lot of pressure to be the one to find
things like this, even though I have no medical training!

4) I am grumpy that the doctors don't seem to communicate with one
another at all - I am constantly relaying information from one
department to another, but I am not a doctor. I might be
misunderstanding, I might not remember perfectly what they said. I
feel like this should be their job - I am HIRING them to care for my
child, and I am having a hard time feeling like they are doing a good
job.

5) I am REALLY angry at Hem/Onc because NO ONE, not a resident, not the Nurse Practitioner, not a doctor, not anyone came to examine him while he was inpatient! My husband, while going to get a soda, saw our Endocrinologist chewing out the Oncologist on call. Endo. was very angry that Matt's sodium had gotten so out of control before labs were ordered and he was contacted. The oncologist was right around the corner, but couldn't come check on Matt? Then we get a random instruction from the tech assigned to Matt (so not even the NURSE) who tells us that Matt should take his 'make-up' dose of chemo that he missed the night before. She said that the oncologist said 'the parents will know what to do.' Um, NO, we do not know what to do! Why don't you come in and tell us so we can ask questions and you can examine our child!

I think I am done venting, but I am just so frusterated with this whole process. I wish there was some sort of primer, "How to be the non-insane parent advocate for your child with cancer." Maybe there should be a magazine or something - "Cancer Kids", a magazine for parents of cancer patients! I truly am out of my element here, and I think that doctos forget that this isn't a natural process for parents and I, for one, have no CLUE how to do this 'right'!

12 comments:

Mindy said...

Let me start off by saying two things. First of all I have no idea what you are going through! And secondly this is going to be a super long comment.

I have a friend who had a little boy who was born missing the left half of his heart. His first year of life was filled with operations and hospital stays. My friend had to become his advocate as well. She amazingly learned all the lingo and was actually at times able to make suggestions to his doctors that they hadn't thought of and really helped his condition. Right before his 1st birthday his heart started failing. He was admitted to Primary Children's and was waiting for a new heart. During this time he actually got RSV, and as my friend put it "Everyone just gave up on him". That's right all the doctors and nurses wrote him off and thought he was going to lose his battle. Well he is quite the little boy, he was able to fight the RSV and a few weeks after his 1st birthday he was blessed with a new heart.

I don't think my friend could tell you how to deal with cancer issues, but she sure knows how to be an advocate for her child. If you would like me to get you two in contact please let me know. I am sure there are lots of moms that you know that have been or are going through the same things, so I don't know if you really need to talk with her.

Good luck and we are keeping you in our prayers. I am so glad that Matt was able to make it to the end of year program. I was praying pretty hard for that one.

belmomma said...

Alli,
I am so sorry to hear that the medical people aren't being so helpful. You'd think that with the world of modern technology they'd be able to keep in touch easily about shared patients. I'm glad you persisted, as Matt is YOUR child, and you know him the best. I'm sure you feel like you're just barely keeping your head above the surface, but you are doing an amazing job keeping everything going.
We are praying for you and your family. Take care
Denise

Karen said...

Alli, don't blame yourself! You did what the "Professionals" told you to do. I have watched my sister for 20 years fight for her daughter who was born with heart defects and has been considered "terminal" since she was about 8! She is the one that has shown me that being that "mom" can only help your child. I guess because of her, I have always second guessed the Dr.'s. I have been a "pesky mom" the last few months, but I got what I wanted and Marcus has been fine, but at least our minds have been set at ease.
I am really sorry about all this and I hope you don't have to leave, but I don't blame you if you do. Matt deserves the best care.
You are a great mom and are doing an awesome job especially dealing with what most parents don't have to deal with. Trust your instinct (we both know its more than that) and you will be blessed. I admire you a lot for keeping such a loving and happy spirit around you. Hang in there.. you are amazing!

Dina said...

You have every right to be mad! This frustrating experience could have been life threatening for him. I guess you just need to be the annoying mom from now on. Better to ere on the safe side. You know him best. We have had a very frustrating experience with one of our children as well (life threatening) and I realized that no one cares like we do.

Ben said...

Alli,
I really do believe that moms have a special intuition given to them. Matt is so blessed to have you. Even though you are not a doctor, that intuition is a precious gift. I have been able to intervene for Benjamin a few times, and what a difference it has made. You do a great job, and I don't know anyone that could handle your situation better than you. Hang in there.
Jenn

Sheila said...

Love Mother's intuition.
Also, I beleive you have the right to have the state assign you a social worker to look after Matt's best interests medically. I know when he is actually impatient this type of personnel is on site. Make sure that you fight for your rights. If you have to... talk to an attorney for a consultation, they know the laws in regards to patient rights. I totally agree you shouldn't have to know all the medical stuff that doctors are paid and educated to know... and they really need to earn their money not just expect it. My thoughts and prayers will continue in behalf of you and your family. I am glad you were in tune with the spirit. I think you earned the right to be grumpy. toodles, Sheila

Jessie said...

Wow, how infuriating. I'd be ticked, too. Louie and I heard this story on NPR about how "following procedure" can often cause a lack of communicate and a lack of intuition. It told the story of some dad in Michigan who ordered lemonade for his kid at a ball game, only to find out it was "hard lemonade", and then they went through all this horrible stuff, for a mistake that wasn't his fault. Did you hear that one? Anyway, it made us so mad.
Maybe you could talk to some other parents and get together to talk to the hospital about the lack of communication between departments and how difficult and potentially dangerous it is.
And maybe you could start a magazine! That would be awesome.

Karrianne said...

Alli, I know this has got to be so hard for you, and I'm not even going to pretend that I know what you're all going through. But don't ever feel afraid to be "that" parent who asks for extra tests or requests a second opinion or whatever for whatever. You know Matt better than any doctor. And you also have someone on your side who knows Matt better than ANYONE else. Heavenly Father is going to give you those promptings, those little feelings that say, "Check again... somethings not right... " Listen to those feelings. It's always better to be safe than sorry when it comes to the care of our children. Don't let it upset you too much, you're doing an awesome job. Let the Lord guide you and although you'll probably still not get everything perfectly right, you'll never go wrong.

Katie said...

I fought and fought for Bridgette, even though she never had much of a hope. I needed to know that I had fought and done everything I could for my baby, and then I could leave the rest up to the Lord. I am so grateful for that peace of mind. I'm also grateful for my mom's Mama bear instinct that saved me when I needed it. You're a good Mama bear, and the best thing for Matt!

michigan_herrs said...
This comment has been removed by the author.
michigan_herrs said...

I am not a very active member of the PBT Yahoo Group but I just caught your last post to Loice.

I questioned the protocol our home hospital offered us and by the grace of God, Loice and Kathy found me and helped me navigate our way to St. Jude's. They will forever be angels to me. But one of my problems with the children's hospital back in Detroit is similar to what you are describing, a lack of communication between the doctors and departments. But here at St. Jude I have found that I get very little say at times. I could not believe that the doctor who did rounds yesterday morning asked my son if he wanted anything for his nausea (it is really bad). Kevin said no he didn't. BUT my son is 7 YEARS OLD and is SICK of taking medicine. Of course he doesn't want any, she wasn't offering candy. I asked for the IV form of Odansetron (sp?)because I have seen it help him. But the Dr. listened to Kevin and not his mother!!! For heaven's sake! It is not Kevin's cancer that is going to send me to the funny farm, it will be the Dr.'s
Overall the system at St. Jude is wonderful.There really is not a problem with communication around here. If anything the opposite is true. If you need any help feel free to contact me.

Rachel Skousen Herr

MoziEsmé said...

Sorry you're feeling grumpy, but let me just say - you have every right to be a protective mamma bear where your babies are concerned. That's the mothering instinct God gave us!