Thursday, October 15, 2009

I wanted to scream today.

I really wanted to scream. Or cry. Maybe even a little bit of both.

Today was the appointment with our GI doctor. You may remember that Dylan has been having increasing issues with massive amounts of spit up? Yeah, so today was going to be the day that we came up with a plan. The day that we'd come just a bit closer to an answer. A reason why he is losing weight and spitting up 25 times a day. At least I thought it was. I showed up prepared. I had been writing notes upon notes over the past week. I wrote down everything that he had eaten. All fluids. I even kept a spit up log. Remember?

Problem was - they were very busy. I'm not so sure they wanted to hear everything that I wanted to tell them. I was shown that indeed he has lost more weight. While looking at the computer screen - "See that dot? See how he has fallen off the curve?". Yes, yes I do. I'm freaked out. Now what?

The nurse thought that we may want to move forward with an upper GI. Yes!! This is what I had thought as well. (Not that I know anything about anything medical, but still.) She went to check with the doctor to make sure she agreed.

'Spose not as she came back with a different plan. A plan that involved doubling his Prevacid and getting some blood work done. She wants to make sure his thyroid is working properly. I told her that we just had his thyroid blood work done 3 months ago, but she wants to have it taken again. She said to make a follow-up appointment in one month so we can check Dylan's weight again.

Ughhhh. But...but. That's it? No upper GI? No...anything else? We're just going to keep going on as we are? 25 spit ups a day, weight loss and all?

Guess so. We headed downstairs for blood work.

An hour later, three hours after we had arrived, we were in the car driving home. No better off than when we had arrived. No plan. I wanted to scream. Or cry. Maybe even a little bit of both. I tried to tell myself that there is really no reason to cry over spit up. I mean really. It's spit up for cripes sake. Yes, it's frustrating. Yes, it requires ungodly amounts of laundry. But you know what? No. It's more than that. It's scary to me that Dylan continues to lose weight. It worries me that Dylan is no longer able to tolerate floor time play. It bothers me beyond belief that he isn't able to just...be! Everything, everything revolves around keeping his food down. I wanted a plan today. I wanted some hope and instead I feel like we were rushed out of the appointment with no answers.

As I was sitting on my couch a couple of hours after the appointment, the phone rang. It was Dylan's GI doctor. She said that they had been talking about Dylan a bit more and have actually decided that we ought to go ahead with the upper GI after all.

Ah, finally. Something! I suppose I'll hold off on my screaming for now as we may just get to the bottom of this after all.

17 comments:

Hector and Jennifer Varanini Sanchez said...

Thank God they called you back. I was beginning to think they had a malpractice suit on their way. Seriously! They need to address the problem and do the tests necessary. I sure hope you get some answers! We want to keep those cute chubby cheeks on your gorgeous boy!

Wendy P said...

Oh honey, I'm so sorry you had to go through that! At least they called you back. Now, fingers crossed for some answers.

Jeanette said...

So sorry to hear about that! Poor Dylan. I hope that you are able to make headway. Don't be afraid to go for second opinions if they drag their feet.

Two Mamas said...

Laurie, I'm also a lurker here, but my son Bobby, is 18months old and has DS and an AV canal defect. We've struggled with GI issues for the past 17 months, and we had to push, push, push our GI docs to do any tests. Last October, after an upper GI and sigmoidoscopy I swear I all but bullied them to do, the results came back that he had H. Pylori, a potentially cancer causing infection in the stomach when left untreated (and the treatment being so simple... two antibiotics and prevacid). After that, we thought we were done with the GI problems and home free. Not so. What started out as not great GERD when he was 1mo old, turned into GERD from h*ll, and he resumed the full vomitting and weight loss you describe. We tried everything... prevacid, lactulose and reglan to move things thru his tummy faster, a tucker sling, elevate the bed, formula changes, acupuncture, herbs, massage, you name it, we tried it. So, in the end, he wound up getting a Nissen fundoplication that basically wrapped a part of his stomach to the lower part of the esophagus, such that he can't vomit. It's made a huge difference. Bobby's gone from a boy who was down around the 25th percentile on the DS growth charts to one who, as of this past Monday's pediatrician visit, at the 75th percentile (DS chart) for length and 60th-ish for weight (DS chart, again). The moral of this story, you are your child's best advocate. We sought several opinions, and I'm so glad we did. I'll be keeping you and your family in my thoughts and prayers.

If you want to check out Bobby's progress, see his blog, at:
http://bobbygrunsted.blogspot.com

Good luck to you!

Heidi H said...

absolutely agree with the last comments - push, push, push your doctors and don't take 'no' for an answer! you know your son best. think about it... if it was your doctor's kid, do you think he/she'd put off an upper GI? not a chance. when it comes to getting answers, be a pushy mom - we all support you!

Katie said...

Can you see an different doc that cares more about you, your spit up diary and your precious Dylan? They should definitely care more about fixing the problem now.

Adrienne said...

Laurie I agree with the woman who wrote about her son Bobby and the Nissen Fundoplication- I know I've mentioned I used to sell Prevacid- well we rarely talked about H.Pylori or the Nissen F. so I didn't even think about it until I read this ladies comment. Definitly check into that! So glad they called you back and want to move forward!!

Katie said...

As I read, I was going to say I would have gotten back on the phone to the MD and told them how I felt and what I wanted. Thankfully, they got back to you. Hope you get some results and useful recommendations.

Tara said...

Thank God there was a happy ending. I was on the edge of my seat, frustrated right along with you. I'll pray that all goes well so you can get this very important issue resolved and Dylan can start putting on the pounds! Good luck.
-Tara

The Lehnick Family said...

What an ordeal...so sorry you had such a frustrating appt...I am so glad she decided to call back and change her action plan...I wish doctors REALLY could see the REALITY like we see it! I will be praying that they find answers fast...Dylan hang in there buddy! And mommmy too!

Sharon said...

Laurie, hang in there. But if you're with an office that you don't feel is listening well or not spending enough time with you, I'd consider trying another specialist to see if it's a better fit.

Monica Crumley said...

Boy, how frustrating for you. At least the doc thought about it and decided to go for the test after all... after wasting 1/2 your day and nearly bringing you to tears!

Sasha said...

I am so sorry you had to go through all of that. Nice that they tell you he's off the curve and then send you home. I am sooooo glad that they called you back for an appointment. Hopefully they do the testing soon. Do you have a dietician that can help you maximize his feeds so that he's getting extra high cal's in the meantime?! Just thinking that if you have to wait long they may want to help him gain some weight. How frustrated you must feel. For whatever reason we are on a good week for reflux, but I have sure had the bad weeks. Hang in there and fight for what you want!!!

Anonymous said...

Hey Laurie..it's Ang...Where is ur GI? We go to MGH in Waltham with Victoria...Dr. Katz is AWESOME!!!!! Call me if u need some help!!! Upper GI's show alot...prevacid NEVER worked for Victoria...only PRILOSEC...!!! Good Luck!

Sharon said...

Laurie, I was thinking of you yesterday and hoping you would be getting some answers, but worried that you wouldn't. Going to an appointment just to get another appointment is so frustrating! I hope the upper GI will give you the answers you need.

Angela said...

Oh, I am so glad they called you back, or I was about to go NUTS for you.

Amanda said...

Oh I'm so happy they called you later in the day. I am crossing my fingers that you get the answers you need. Poor Dylan!