The notebook where I take notes at every doctor’s visit and phone call regarding Apollo’s care.
We are ten days from surgery. It feels just around the corner and an eternity away at the same time. Apollo hasn’t been sleeping or napping well since his MRI on January 18. It’s been at least four or five nights since he’s slept more than two hours straight. I feel myself slowly slipping toward insanity again. There is a reason they use sleep deprivation as a form of torture.
One of the shirts we bought for Apollo’s hospital stay.
Ten more days to: stock the freezer with meals, finalize arrangements for the other ten children, to keep Apollo healthy (we had a close call with a fever and vomiting Thursday night), to plan the kids’ school work so they have something to do while staying away from home.
I finally received Apollo’s medical records from our doctor’s office (and have since requested them from Seattle Children’s). Very enlightening. Apollo made seventeen visits to our doctor in his first 18 months of life. This doesn’t include his nine trips to Seattle Children’s Hospital or other tests. This is in a family where several of his siblings have never even had a doctor’s visit (with the exception of required physicals for our adoptions).
Shirt number two…can you spot the aortic arch?
Many posts about Apollo have revolved around his weight and more than one person has questioned our obsession with it. And as I’ve said many times, it wasn’t his weight, but his erratic gaining/growing that was the issue. Here’s a list of his weights at his seventeen doctor’s visits:
6/26/10 8.12
7/12/10 8.9
10/4/10 13.4
11/19/10 13.7
11/24/10 13.7
1/4/11 13.9 Apollo was six months old at this visit!
4/18/11 17.8 *stridor
5/9/11 16.4 *stridor
5/26/11 16.5
6/1/11 16.2 *failure to thrive/ stridor
6/24/11 17.9 * failure to thrive
7/11/11 18.2 *failure to thrive/stridor
7/22/11 17.7 *failure to thrive/stridor
9/2/11 18.7 *failure to thrive/stridor
10/24/11 19.4 *shortness of breath/stridor
11/18/11 19.11
12/2/11 20 *stridor
It was interesting to see that while my doctor only mentioned failure to thrive once to me (and that was to say “I can’t see calling a baby as active and engaged as Apollo failure to thrive) he actually listed it as a diagnonis at five of these visits…and you can see the number of times stridor (noisy breathing) was mentioned.
And when the ENT did the bronchoscopy and adenoidectomy in December he actually said to us, “Since he’s back on the growth chart, you don’t need to worry about a possible vascular ring“…According to my doctor’s records, Apollo’s weight was in the 1% in December. I suppose that’s technically back on the chart…but that hardly seems to the point where it would be beyond concern.
It is so very frustrating, looking at that list. Seeing how many times he was in to see the doctor. To see how much he has struggled with his weight. To know (from my research) that most patients with a double aortic arch present primarily with respiratory issues. From nine months on his sleep is listed as “abnormal“. It also mentions “decreased subcutaneous tissue” i.e. less fat. From a year old his general health is listed as “abnormal” as is his eating.
*sigh*
I know, I know. Shut up already. He’s been diagnosed. His surgery is scheduled. Get over it. And I’m sure I will someday. Especially after I get some sleep.
No, don’t “get over it”. There were major errors made in many places by many people. I’d contact those doctors and be like “hey, remember how we shouldn’t worry.. yeah…” and report them to where ever you report doctors. There’s a level of willful ignorance and yes, I’ll say it, malpractice, that I wouldn’t just get over. You’ve every right to be angry and frustrated. It shouldn’t have taken so long. Hugs to you Mama.
So don’t get over it… shocking to see it all written on that it took so long to get your baby what he needs. Love the t-shirts.
I hear there is a great iPad app for tracking medical records easier. But I don’t know the name of it. I have a friend that uses it for her child with many doctor visits.
I still haven’t gotten over the mistakes that were made with my oldest (21 years old) when he was a cardiac infant. There is no reason you should get over it. We will be praying that all goes well.
Blessings,
Dawn
Renee, I dont have children with issues like Apollo….we have asthma issues, which are nothing compared to what you are dealing with. I agree with the other commentors above. I would be going back to certain doctors, with their diagnosis in hand & show them their ignorance and then i would also report them for willful ignorance to the Medical Board. Everyone of the doctors who did not hear your concerns or blow you off concerning your concerns over your child needs to have a report by his/her name. There is no excuse for any doctor not listening to their patient or patient’s parent. Obviously you arent one of those hypochondriac mom’s. After 14 children – which i’m sure that is generally mentioned at most doctor’s appointments with new doctors – and the fact that you have 1 with a major issue…says a lot about you not being overly dramatic about your children & their health care.
I am praying for you guys & little Apollo. My heart breaks for you guys. I have a 15 month old Son and I literally squeeze him tighter everytime i read your blog.
Blessings to you and your family these few days as y’all prepare for a major undertaking on the 7th.
Wendy Simmons
Wendy, oops, that comment was meant for someone else.
I agree there is nothing to get over – you baby is sick and has been for a long time. If anything, by reviewing all this you are gearing yourself up for the battle (his surgery.) Hopefully some day this will all be a distant memory – something he will have overcome.
Wow, 17 visits in 18 months…that is a lot even for a neurotic mom that runs to the doctor for every little thing. I don’t think you need to get over it. It’s earned you a few more rant sessions and emotional breakdowns. I sure hope you can get some solid sleep leading up to this surgery. It would be nice if you could get through it not completely delirious from sleep deprivation.
I honestly believe that when you have time (HAHAHA), you should print out every post chronicling Apollo’s health and send the packet to each doctor that dismissed you along the way. The problem isn’t that they are bad doctors (although they may be), the problem is that they forgot this was a person–that it was a BABY–who was suffering and, in turn, an entire family that was suffering with him. The medical records are nice, but they don’t do anything to remind the doctors that their missed diagnoses had impacts. Impacts that hurt a child and his family.
I think every doctor needs to be reminded of that from time to time, because it is too easy to forget in the rush of modern medicine.
Cherie, I appreciate the sentiment, but since the ENT wouldn’t listen to us face to face, I don’t think he’d read anything we gave him
Praying for you.
I don’t mean this in a judgemental way at all but I was curious as to why didn’t you take your son for a second opinion or find a different provider instead of going back 17 times? Failure to thrive is a medical diagnosis yes but it is based on several things, one of which is what the parent says. They probably wrote that as the medical code and reason for your visit. I understand you have been through a lot and it is unfortunate that they didn’t find this right away but my question to you is have you told your doctor’s who missed this diagnosis about how you feel? Have you let everyone of them know what has transpired with Apollo so hopefully it doesn’t happen to another baby? They need to know this and I hope you have told them and not just vented on your blog. Doctor’s are only human, trained in the medical field, but still human and make errors. Do you still go to your doctor in which he had the 17 visits? Praying for you and your family.
Liz,
Our family continues to pray for all of you. You are such a strong and amazing mom. Let me know if you need help with childcare with any of the boys while you are in Seattle.
Echo
Thank you, Echo!
When it comes to our kids I’m not sure us Mom’s ever “get over it”. When I was 5 I had a birth mark removed from my leg. “No scar” they told my parents. Yup, big scar. Still makes my Mom mad and I’m almost 40. Me, I could care less. To me I’ve always had it so it’s just part of who I am. They also kept telling my parents that they could not stay with me…um, I was 5. She fought them and got them to back down a bit but honestly I still remember being alone in the room. Pisses her off to this day. There are 5 of us so there are more stories but my point is we are all grown and fine but this stuff still makes her mad. I think the biggest is when she had her last baby who was 2 months early. They told her not to name my sister because she probably wouldn’t make it. My sister is 32. My Mom has not forgotten.
Good Luck with the surgery. I hope Apollo stays germ free and things go smoothly for you all.
Don’t feel you have to get over it. Our third child was misdiagnosed with a deadly metabolic disorder when he was a newborn. He had a rockbottom-low carnitine level, per the newborn screening, and instead of doing testing to find out WHY he had that level, they just told us to put him on carnitine (even though his formula already had it) at levels that made him sleepless and caused diarrhea. They tested my carnitine level and found I also had a seriously low level, and assumed (based on just ONE test) that I also had the disorder. Finally I had them test ME for the disorder, and i didn’t have it.
Finally we took our son off the supplement, and he improved dramatically. We sought a second opinion, and that doctor, after testing me and him and actually TALKING to me, decided that my undiagnosed celiac disease (triggered by the pregnancy) had led to my very low carnitine level. Since babies in utero don’t synthesize carnitine, they depend on the mother for it. I didn’t have carntine for him, so he didn’t have any when he was born. I went on a gluten free diet and took supplements, and my son gets tested periodically but he’s been fine. We went through a six-month nightmare of thinking our son could go into a coma or die if he didn’t eat every two hours, all because of a stupid doctor. There are stupid doctors out there. When my second son was born he had to have his tongue tie corrected at 2 weeks. The surgeon also pointed at my son’s bellybutton, which had healed a little funny–it is kind of a “innie” with an “outie” inside–and suggested we have it surgically corrected. I asked him what would happen if we didn’t, and he said, “Well, he’ll get laughed at in the locker room.” Excuse me? We should have our child put under anesthesia for plastic surgery on his BELLYBUTTON, at two weeks old, because he “might get laughed at” when he’s older?” Ugh.
Thanks for this. And I consider it a matter of a doctor (ENT) not listening…and needing to “prove” he was right and putting my son’s life at risk to do it. The pulmonologist said, more than once, “this is a happy ending”….my husband and I KNEW something was wrong and pushed for that MRI (over-stepping the months-long wait for a referral to a cardiologist). Once they knew he had a DAA, he saw a cardiologist that day and it was, rush, rush, rush to get it fixed right away. Because, ultimately, it would kill him in one form or another. By the way, when I went over all the entries about Apollo on the blog, I found our naturopath, said back in January of 2011 if anyone had looked at his heart yet….
Renee, it has been our experience that so many doctors want to just be right and be done with it. The doctor who insisted my son had a metabolic disorder, after finding out I had a low carnitine level and was still alive at the ripe old age of 32, wanted to write a paper on me because he said there were only about 8 adults out there who made it to adulthood with carnitine deficiency. He said he was going to talk to Mayo Clinic, and then we never heard from him again. He never called to follow up on our son, either, who he had left with a carnitine supplement prescription at a dosage that was making him ill.
There are GOOD doctors out there. I think my OB and his partner pretty much walk on water, because they helped me have three unmedicated VBACs, with 10-12 pound babies, and have been nothing but supportive. But there are also bad doctors, just like there are bad lawyers, attorneys and teachers…
I worried about his heart before that MRI too — though my concern was for pulmonary hypertension from an undiagnosed heart defect, which I think would have been a substantially harder to treat condition than DAA (which sounds like no picnic either). So glad you lost your nice and got their attention. So glad this is treatable. Even if things aren’t perfect after the repair, they should be so much better!
I think I mentioned it in an earlier comment, but make sure you get hooked up with Child Life when he gets admitted. You might have to specifically request it, or it might be automatic. They should be able to help with strategies to manage his doctor anxiety and make his stay (and yours) nicer.
Thoughts and prayers continue to be with you and your family.
Oh, and that heart T-shirt is AWESOME.
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