A breakthrough

So last weekend I was pretty upset. I felt like we had exhausted all of our resources and yet we still had no answers. After I calmed down, a thought came to me. Back in early December, before we knew about Jayden's ASD doctors had talked about the potential of an MS diagnosis. I researched everything I could about MS and found out that there are 6 Pediatric MS centers in the United States. I emailed every one I could and waited to hear back from them. In late December, I heard back from one and we kept missing communication. The center would call me and leave a message, then I would call back and leave a message. Eventually, I thought her problems were heart related so I just stopped trying to get a hold of anyone. In early February, a different center emailed me back saying they had switched over their email server and just barely retrieved my email. She said to get in contact with her if I still needed assistance. I just felt like her problems were all related to her heart so I didn't respond, but I didn't erase the email. Last weekend I thought, I should just try and see if they have anything to offer us. I emailed her late Friday night and didn't think I would hear anything for awhile. Well, to my surprise the social worker emailed me first thing on Monday morning. I was completely shocked. Whats more, is that within a few hours of that email, I was on the phone with her doing their 1 1/2 hour intake interview. I figured because all her MRI's were coming back clear and no one has mentioned MS for a while I figured they would tell me there was nothing they could do. She told me she would take our information to the board and get back with me on Wednesday. Well Wednesday came and she called me back. The board decided they would like to take on her case and assigned her to a neurologist named....Ann Yeh. (pronounced YAY!) Seriously? Is this a sign? It was all I could do not to burst out in song! Although we are going in through the MS clinic, we are being seen at the Jacob's Neurological Institute. They deal with all sorts or neurological disorders. We scheduled her clinic day to be May 5 and hung up for the day. I started looking at flights and places to stay. Well, Mary, the social worker, called me back on Thursday saying that she had been approached by the research team and they would like to have Jayden be seen in a research study. This means ALL of her testing (new MRI, etc.) is covered by the study. (They are an out of network provider for us, so even though we have met our out of pocket maximum we would still need to pay 20% of all testing while there.) What's more, they are setting us up at the Ronald McDonald house AND getting our flights for $50. I feel like we are finally going to see a neurologist who really wants to get to the bottom of all this AND is skilled in complex cases.
We did see a homeopathy doctor this week as well. He had some pretty interesting things to say and $550 later we felt like he might be onto something. Unfortunately 4 days later we haven't seen any progress. (He told us by day 3 she would be tons better.) We continue to take all the nasty pills and tinctures he gave us but we don't hold out as much hope as we did after leaving his office. He was really cool and did say some pretty cool things. Oh well, at least we have the good news about NY!!

Here we are...again

Well, here we are again at yet another brick wall. We are so upset and puzzled as to what is going on with Jayden. We had another x ray done (to verify that she wasn't constipated) which surprise surprise came back normal. They did a CT scan that showed nothing of significance. They had us talk to psych (saying they felt she was just anxious), neurology (which said they think it might be a nerve problem but follow up in a month or so with the neurologist), GI (which has run every single test they can think of), Rehab (who suggested PT and OT), and we asked to talk to the integrated medical team (a holistic doctor.) They ran some vitamin level tests and did the CT scan and xray, couldn't find anything and sent us on our merry way. In their hurry to send us out the door, we didn't see the integrated medicine team, actually get any PT or OT or even get anything but one dose of the new medicine they prescribed. To say we are frustrated is a bit of an understatement. When I found out they were discharging us without even letting us finish our consults or meet our "pain goals", I called our primary care doctor in tears. He was so wonderful about trying to calm me down and offered a few suggestions. He is talking with some friends of his at the Mayo Clinic in hopes that we can get a consult down there soon. Although I am so beyond frustration with Primary's and the entire 7 month experience, I have hope that we will someday find answers!

Change of Plan

So we've had a bit of a change of plans. After seeing a few surgeons we just haven't felt real good about having the gall bladder out. Most of the surgeons have said that they aren't confident that the gall bladder removal will help the situation. After talking with different people and praying we really felt like that wasn't the solution. So she was admitted to the hospital yesterday with GI, neurology, pysch, cardiology, and the rehab team all on consult. Hopefully we can find some answers. So far no answers yet and we kinda took a step backwards by having to rule out a bunch of silly stuff out again. (Like constipation) Hopefully we can get some answers soon!

The Verdict...I think?

So this week we have seen both our pediatrician and Dr. Karnam (the GI doctor). The consensus of the two is that we should see a surgeon about getting her gall bladder out. They both said it's "conceivable", even with no definitive test results to say that the gall bladder is definitely the cause of her problems. Jayden's HIDA scan results were at 63% which is in the realm of normal for an adult but were low for an adolescent. We switched a few of her meds around, but still no changes in her pain levels. The problem with surgery is obviously her blood thinners so we are still waiting to hear if Dr. Sorensen is willing to allow her to use an injectable blood thinner that is used before surgery. We meet with a surgeon on Monday to talk a bit more about that option. We are a bit leary about if it will work but we are willing to try anything at this point!

Another Day...Another Doctor

I used to read blogs with people who had sick kids and I would think, "what about the rest of their family? Don't they have anything positive or non sick kid related to blog about?" I am eating my thoughts these days. I have so much I would like to blog about but it seems as this has taken over our lives. So much of every part of my day is spent researching, calling new doctors, getting advice from others, or doctor visit, doctor calls, or procedures.
Once we see a new doctor, I leave with a pretty good feeling but then I start to over think things and want answers immediately. I know those answers don't come until after everything else has been eliminated but I would have thought that by now they have done every test imaginable...yet still no answers.
On Thursday we had the endoscopy done. At this visit Jayden was down to 102 pounds. I was hoping that it would show there was an ulcer, they would cauterize it and we would be on our way to getting better. Unfortunately, that was not the case. She did have two small tears in the stomach but he didn't quite classify them as ulcers yet. That would not be the cause of her pain. The only information we gained from the EGD was that her stomach is not emptying properly. The last time she ate was 19 hours before her scope and her stomach was still full of bile. Potentially that could still be a gall bladder function problem, but with the test results being "subjective", it doesn't really make a good case for gall bladder removal. He did take some biopsy's but I am guessing they will come back normal, just like every test or blood test has so far.
I happened to have one of my parents of a child this year be a pediatrician and he suggested that we meet with our pediatrician again. He said that given the little information he has, he would make the assumption that the neurological stuff and the GI stuff are related. There are apparently a few more rare childhood diseases that affect both. His suggestion was to try and get our pediatrician to admit her as an inpatient so that the neurological team and the GI team can "pow wow" together to try to find out what is going on.
To date:
Loss of 32 pounds
Hair falling out
"sallow" skin look
bloated
gets chills, but no fever. Like literally her teeth are chattering.
NONE of the 6 medications they have put her on have worked. Not even the zofran.
Tried reglan, anti spasm medication, dexilant (like a suped up prilosec), anti nausea. None of them work.
Bruising (which is typical for being on blood thinners) but with pea size lumps underneath the bruise. I don't know what that is all about.
Her pain is the worst when she wakes up, and stays for hours.
She has pain as soon as she has eaten about 3 or 4 bites, but forces herself to eat more. Then the pain continues for about an hour after eating.
Pain starts in the upper abdomen and radiates out both sides and through her back. Lately it has even been moving past her belly button to her lower abdomen.
Pretty much if she is awake, she is in pain.
Any other suggestions? I feel like we are trying all we can to get answers and are meeting a brick wall at every place we turn!

Yet Another Update

So much more to blog about...yet this is what is constantly on our mind! Jayden had her surgery this week and everything went as planned. Her surgery was on Tuesday and we arrived at the hospital at 9. We had to get some additional blood tests run for her GI doctor so we went to the lab and then headed to the cath lab. They put in her iv and did some more blood work and then waited for them to call her up. She went into surgery at about 11:30. She was back in in our room at about 12:45. Dr Sorensen came in and talked to us about her surgery. He said he puts one type of device in about 90% of his patients. He put that device in Jayden and then didn't like the way it looked so he pulled it out and put in a helix device. Her hole was about 25 mm, which is just a little over an inch. That is a pretty substantial hole for a little heart! She has been great, a bit disappointed that her bruise isn't bigger and her leg isn't more sore. Now that we have the heart under control, we need to work on her GI problems. She has lost about 30 pounds, 15 within the last 6 weeks. Her hair is falling out, her skin is becoming "sallow", and she feels like she is going to throw up every time she eats. We have been trying to get her in to see a GI doctor and finally got her to see a great one on Monday. He ordered some more tests and we will see what those tests reveal. Hopefully we can get some answers to get her to feel better soon!
I am so grateful to all our friends and family who have been so supportive of us during this time! I can't even begin to list all the nice things people have said and done for us. It is amazing how completely true the poem "Footprints in the Sand" is. I know our Heavenly Father has carried our family through this trying time in our
lives. I know we have and are continuing to learn things that we would have not been able to learn any other way. I am so grateful that He is aware of our every need.

Another Update

I know I have so much more to blog about and eventually I will try to catch up! But for now I will just update on what we have found out this week. We met with the cardiologist, Sherman Sorenson. Before we met with the doc, we had to repeat the bubble test and do some additional testing in his office. The ultrasound guy was awesome and explained everything to Jayden and I. He explained what he was looking for, what different things meant, and showed her where everything was in her heart. When we got to the agitation part, he described what was normal and abnormal before he started the test so we knew what we were looking for. Based on the results of those tests we found out that she does not have a PFO but an ASD. A PFO is something that everyone is born with that is used in utero. Within the first 2 years of life it is supposed to close. If it doesn't, it creates a small "trapdoor" to allow blood clots and unfiltered blood to pass through this hole. An ASD is a hole in the wall between the top two chambers of the heart. This defect allows "dirty" blood to bypass the lungs and go straight into the other chamber of the heart and be recirculated within the blood stream and to the brain. This "dirty" blood causes a host of neurological symptoms and migraines.
There isn't truly a large difference between the two and the surgery is exactly the same. Jayden has a severe ASD but we won't know the exact diameter until surgery. We have tenatively scheduled it for Feb. 22. She will stay overnight in the hospital and come home the next day if all goes well. It is SO nice to know that there is something wrong and she is not just "crazy", and that most if not all of her symptoms should disappear after the closure.
Last night Jayden and I were talking about how grateful we are for this diagnosis. I am sure if we had not been given different the potential MS diagnosis first it would have been much scarier. I know that we have truly been blessed to have gifted doctors who continue to search for answers. I am grateful that we have had this growing experience and everything that we have had to go through to get to this point. (There is no way I would have said the same thing 3 months ago!!)
It seems like surgery is so far away but it doesn't really bother us. We are willing to wait to have a skilled surgeon perform this amazingly simple heart surgery and are looking forward to being able to hopefully get our lives back to normal soon!