Our cardiology visit with Dr Stock was pretty simple. No EKG or echo.. just a simple weight and length check. We chatted for a while and are both pretty excited about how great Owen is doing (on the outside). Of course, we'd love to see him come off the oxygen, but sats in the low 60's are just not cool.
We scheduled our next Cardiology appointment for mid June. That seems like forever away, but we have a visit at Stanford in three weeks. I'm excited to not only see where Owen is medically, but also to go on vacation!!!
We visited with GI yesterday and all I can say is glad that's over. It is such a painful experience (for me) every time we go. We're spoiled with doctors that genuinely care about Owen and know him. His GI doctor is not one of them. I know he's a busy guy, but he really just wants to how many cans of formula Owen is getting and the hours. Nothing else about his health. Not how much energy he has. Not that he's not puking anymore. Not that he's constipated. When I mentioned the last of the three, he said to just give him more Miralax. Genius. Why didn't I think of that. Sigh. Anyway... I mentioned that we are only giving Owen 1 can of Compleat formula in his night drip and I am stopping that immediately because of the morning pukes. He said that I need to give him at least 8-10 oz of the formula daily so that he's getting enough vitamins. When I proceeded to tell him that I spoke with his nutritionists.. ( to let him know that they reviewed his food diary in detail) he cut me off and said sign here and started getting up. He spent a total of 5 min with us and didn't even acknowledge Owen in the room.
Anyone know a good GI doctor??
Regardless of the experience... I am stopping Owen's night drip tonight. He had a painful puke this morning and I am not going to let it go on anymore. I'm just packing more calories and fluids into the day to make up for the night feeds. Have I mentioned that he's thriving on real foods?? Just kidding.
That is all I have for now. I'm praying that we get to Stanford in a few weeks, they take a good look at him and his heart and send us home for another six months. I'm sure we'll have another cath before/in October, since they hate to go more than a year without a cath. I have read some articles on Stanford pushing the Fontan (the last stage surgery for HLHS) until the kids are around 20kilos (40lbs). Wouldn't it be great if his heart would improve and he'd qualify for that instead of transplant? We'll see what's in store as time goes on. I never say never. :)
20 comments:
Geez...Sounds like any GI Doc would be better. You and Little Owen do not deserve that kind of treatment.
Seen a few Doctors like that in my day and it is so frustrating.
You know your boy best and what works best. Hope you find a kind, good listener :)
Good heavens, that GI doctor sounds SOOO frustrating. NOT what you (or Owen) need!
It's obvious(to me) that Owen is thriving and growing with this new feeding regimen. If that GI doctor is unwilling to respect your choices, especially when they're bringing the sought-after results...it's time for a new doctor.
Owen's eyes in that last picture are just *amazing*.
So sorry about your GI experiance. My immediant thought was "Go with your mother instincts!! You are doing such a great job with Owens diet...keep going for it!! Too bad that some docs seem insulted if your method works better than theirs!
I agree that you need to listen to your "mommie voice". Moms know their kids better than ANYONE. If this dr doesn't seem to care to give you the time you deserve, you need a new dr. Surely your pediatrician can suggest another one. That GI dr needs to read your blog and discover what a jerk he is!
agreed. you know Owen the best. i have not found one gi doc that we feel comfortable with in our two years experience - the support has always come from a pediatrician or the cvicu at lpch.
thanks for updating.
we will continue to pray for owen...didnt realize that he could possibly be a candidate for the fontan instead of the heart transplant - will definitely be praying for this!
much love,
victoria
Hi Andrea,
Where do u go for GI appointment? It seems that ur GI doc have the same attitude iwth my son GI doc (St. Joe's). My son too pukes a lot and don't how to help him. I hope you can find a new GI for your son. Its just very frustrating.
Some of the heart moms recommended to PCH.
Glad that everything went relatively well, except for the uncaring doctor!
I was worried when I didn't see a post Monday (I think that's the day the appointments were) or Tuesday. Does that make me a stalker? I hope not, just someone who loves to hear about how well Owen is doing, what a cutie!
My son's GI doctor is WONDERFUL! He is here in NH so it would be a bit of a trek for you but it may be worth it! JK but I really hope you can find a much better doctor!
I've learned the same...never say never! Seriously I never thought Joshua would thrive the way he has after his rough start...look at him now!
Owen seems like he's headed in a good direction these days, with all his new tricks..who knows, maybe the Fontan is in his future!
I look forward to hearing what Stanford says...he seems to be doing so well it seems you'd have to get the ol' "see ya in 6 months!"
I think GI docs are pretty useless especially when it comes to the blender diet. I don't even bother going to any GI anymore. I tried to consult with them at first but it quickly became apparent that they don't listen. FRUSTRATING! I learned early on that there was no one doctor to oversee my daughter's total care. I had to do it. And what's this garbage about needing canned formula for vitamins? Everyone knows that vitamins/minerals/nutrients are best used by the body through natural foods. Hello? Man they are funny.
We had the same problem with constipation while on the canned formula. It's actually what spurred me to give her real food. I thought it was crazy to give her Miralax because the formula stopped her up. It might be a little different for Owen since his digestion might be sluggish due to his heart. Does he have a lot of residual in his tummy an hour after his last push? I would assume not since you haven't mentioned him not tolerating his feeds. This may be TMI but I like to keep my daughter's stool a mash potato consistency and I do this by giving plenty of water/juice a few times a day. I call them her "drinks". I also give her extra peaches, pears, apples or prunes to get things going if I think she needs it. Milk tends to constipate kiddos so if you're using a lot of it that could be the problem. I hope I helped even just a little :) Blessings!
What is it with GI docs? We have one that is pretty much the same - just pushing the Pediasure and ignoring "real" food. Ugh!
Loved the pictures of Owen. They are amazing in black and white. You always seem to capture Owen's adorable personality so much that I feel like we really know him! :) We will definitely be keeping you in prayer as you go to Stanford that maybe he will be a Fontan candidate yet!
I am so happy to hear that Owen has been doing as well as he has and feel bad that you have to deal with that turd-ball of a GI doc. I hope that you can find a better one soon :) I will be praying for the Fontan! That sounds like an amazing plan!
Jen
He is so dang cute!!! Glad to hear he's doing well. How frustrating with the GI docs. You're such a good mama, you know him better and what he can tolerate, etc. Just go with your gut. And wow! the Fontan could be a possiblity??? We'll be praying for that too. Seattle sounds like Stanford, 40 lbs. is their goal with kids too. Feels like it will take forever to get to that!
That gi doc sounds like a real terd. I'm not a fan of Dr's without bedside manner. It should be a requirement. And to not even acknowledge the patient in the room, that just makes me mad. On a brighter note, those pictures of Owen are adorable!
We were very blessed to have an amazingly caring GI doc for Logan here in Iowa. I am so sorry that yours is not doing a better job. If I were you I would search out a new one who can give you the time you deserve and be more receptive to your questions. There is nothing worse than being ignored by your doctor.
As far as the night drip goes. We were told way back when we were still doing them that once Logan took in those calories during the day we didn't need to do it anymore.
My daughter used Arizona Children GI, I know they have several offices throughout the valley. We never really dealt with any of the doctors just with teh PA's but they were great.
You must wear frustrated well because after a an appointment like that you and Owen still manage to look so darling in those photos.
Good for you for wanting to change the GI Doc. Boot him outta here!
The first time we took our daughter to the GI ped specialist was a joke. They took her history and they already had her file from the GI surgeon, cardiologist and such so her file was about 3 inches thick. On the first page in big letters at the top was her HLHS diagnosis. We had our daughter stripped down to her diaper so you can see all her scars and her chest is peaked outward from her breastbone like some kiddos have after open heart surgery. The GI doc walks in reading her chart. He then starts his examination without hardly saying a word. He listens to her lungs and her heart with his stethoscope and says with alarm,"Do you know she has a heart murmur?" Holy crap! Really! I pretty much knew right then and there that this guy is a butt clown. We still laugh and shake our heads in disbelief about it.
Dr. Nancy Yokois practices pediatric gastroenterology and pediatrics
they have 3 offices. I loved her for both of my kids!
www.ourjohnsonkids.com
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