The New Guy and Resting Easy

I've never been one to keep up with New Year's resolutions, so why start now? So my last post was a total "I'm ticked and gonna vent" post. Sorry! To say that I have been feeling desperate, depressed, overwhelmed, exhausted, etc. lately would be an understatement. In the last week though I have had so much support from family, friends, doctors and my husband. It has made a HUGE difference. I still get frustrated. I still over think. I still worry. But for now, I'm a totally sitting in God's peace. Thanks for all the thoughts and prayers. They are most certainly helping.

I'll back track a little and then jump into the last two days. If you've read my blog before, you know that I've had a lot of trouble getting any clear answers concerning Kate's health. This constant torment of inconsistency is what has just about pushed me to the edge. As wrong as it is, I've often thought that at least the parents of kids with cancer know what they are dealing with and have a plan. Not knowing what is wrong or what to do is horrible for a control freak like me (and yes, I know that is why God is leading me down this path!). I have definitely learned that I am NOT in control, even a little.

A few months ago, I was introduced to a sweet lady at church, named Michelle, whose daughter has a complex medical case. We spent a while chatting about our cases and she highly recommend a pediatrician that really went above and beyond to get to the bottom of their case. She talked to Dr. M and asked him if he would look at Kate's chart and see if we were missing anything. He agreed and suggested he could "use some midnight reading". The week before Christmas, we dropped off a full copy of her record, including my personal notes, lab records and pictures. Sunday at church Michelle and I touched base and when she learned I hadn't heard back from Dr. M, she recommended I schedule an appointment to go in and see him. I called and was able to schedule a conference that would allow for a good amount of time.

Yesterday was Kate's cardiology appointment with Dr. W. To date we had one pediatrician who told us she had a murmur that needed to be checked, one pediatrician who didn't hear anything until I pushed her on it and then diagnosed it as an innocent murmur and a pulmonologist that didn't hear anything. Had it not been for the fact that I am fed up with the guessing game and am grasping at straws, I probably would have dismissed it all. The nurse did an EKG, which Kate sat completely still for. The cardiologist came in and started by explaining that Kate didn't have a serious problem, just by observing her activity and size. He then went through the same old spiel about innocent murmurs, what they were and that there wasn't anything to be done for them. We discussed similarities between his daughter and Kate. He then listened to her and said, "Well, never mind. She has a ventricular septal defect or VSD". He explained the heart and drew a diagram. He explained that Kate has a hole in the septum or wall that divides the left half of the heart from the right half in the lower quadrants. This hole passes oxygenated blood back into the non-oxygenated side. Basically it makes her heart work harder than it should.

Large holes cause more severe symptoms. Typically, before the child is one, the hole will close on its own. Occasionally, they will close by the time the patient is four. The test to measure the hole is an echo cardiogram. In a child Kate's age, he said, this would require general anesthesia. He didn't think it was important to do one now because it was not symptomatic at this time. Her EKG was normal and all of her chest x-rays were clear of swelling (a sign of distress). He said that if it was still audible at age 3 or 4 we could do an echo without sedation and determine what to do then. If the hole was very small, she could just live with it. If it was too large, she would have to have surgery to patch it. In his opinion, from a heart standpoint, the defect did not effect her breathing issues or anemia.

Strangely, I was ecstatic after leaving. I was fully expecting to hear that it was innocent and to scratch it off her list. Even though this was not good news, it was the first appointment I walked out of with a clear diagnosis and a plan. It made sense. There was at least something there. I felt slightly crazy for being excited that my child had a hole in her heart. Maybe I am crazy?!?! I did still question, to myself, whether or not this had an effect on her other issues. How many blood and oxygen problems can one have without them overlapping?

In our church, there are two children, whose mommies I am close to, that have had very similar defects that were corrected with surgery. It is such a blessing to have them to call with my millions of questions. Everyone I talked to was surprised that the doctor did not go ahead an do an echo to get more answers and suggested I push for it. I did call and leave a message for the pulmonologist's nurse. I just informed her that Kate had been diagnosed with this and that I didn't know if it would change what all they wanted to do on the day of the procedures. I didn't hear back. In a simply "unlike me" way, I prayed that God would make it clear today and, get this, didn't worry about it.

Today we went to our conference with Dr.M. We were called back before I finished filling out the paperwork and shortly after, Dr.M came in and introduced himself. He explained that he had emailed me about her chart, but it didn't go through because of a typo. He excused himself for a minute while he printed it out. We spent the next hour and a half discussing EVERYTHING. He was absolutely amazing and a total God send. He covered so many things, was so knowledgeable, so down to earth and so willing to listen to our every concern. He is most definitely a go getter and as he stated many times, "I just like to know what we are looking at". He isn't a fan of unknown's. He is also my new best friend! :) Here is a brief, unorganized breakdown of what he said.

- Regarding the lesion on her arm x-ray - Since the radiologist that read it did not give a diagnosis or a name to the lesion, he was not comfortable leaving it that way. He said that bone marrow issues (ie. cancers) don't always show in routine blood work. However with all of the test she has scheduled, he felt that it was okay to wait until summer to do an MRI of her arm. This issue was one I had laid to rest, but he doesn't want to leave any stone unturned!

- Regarding her immune deficiencies - Her original labs showed deficient. Her second set at the big lab showed low normal. He wants a third set drawn so he can take the average. He doesn't want to guess which set was "right". He also wants to add a few extra tests that he is curious about. It just so happens that he did his residency (I think) with our immunologist and knows her well. This leaves me with no qualms about emailing her with his requests, knowing that there is a mutual respect there. Small world? He even mentioned that she would probably refer to him as an idiot and then do the test. :)

- He feels that she is on a dangerous level of steroids, both during flare ups and her daily meds. Basically he explained that the majority of his asthmatic patients have good asthma control with 1/4 of the daily steroids she is on. Despite being on four times the dose, she has no control. He wanted to switch to a different drug that is not really approved for children, but said I could run it by the pulmonologist, Dr. H, first. He also wants a sweat test done to rule out Cystic Fibrosis (we have this scheduled) because while he doesn't really think she has it, she is acting like a CF patient and he wants to rule it out. He does feel that the heart defect could effect some of her breathing issues. He still thinks she is going to be an allergy/asthma/eczema kid regardless, but feels like it does play at least some role. He actually has a kid that tested negative for CF, but has all of the symptoms of it, so he treats him like he has it and it works. His motto seems to be "treat the patient" regardless of tests and textbooks. However, he is VERY educated and not afraid to use all of the specialists too. He is of the philosophy if the meds aren't working, find one that does, regardless of protocol or negative/positive tests. He has an amazing balance about him. He's just as interested in learning as he is fixing the issue. It's like it's a challenge to him.

- He feels that her low immunity, asthma and heart defect all make it easier for her to get sick and make it harder to get over. It's like she's getting kicked while she's down, constantly.

- He wanted an echo cardiogram done soon. He wasn't sure why they didn't do one yesterday. He said there is a good chance they will still wait if she needs surgery, but he wanted to know what he was dealing with. While listening to her he said it was most definitely a classic VSD. Two doctor's; one diagnosis? Could it be? The only thing he noted different was that in most VSD's the murmur is only heard lower since it is in the lower chambers. He could hear some noise higher than normal too. This made him even more certain that we needed an echo now. Sometimes there can be multiple defects and the sound of one covers up the others. I told him that she would be sedated for the procedures in a few weeks and I wondered if they could do an echo then. He said he would call the Pulmonologist and the GI specialist, which he knew both by first name, and see if it could be arranged. If they couldn't, he would just order it himself for a hospital around here. He said that it might be stepping on toes a little bit, but he didn't mind and really wanted to know. Have I mentioned I like his style? He also said in his experience, the vast majority of VSD's close by the time the patient is one and since Kate is pushing two, he felt more likely then not, it wasn't going to close on it's own.

- He agrees that we need to continue with the plan to do an EGD scope, pH probe, bronchoscope and cilia biopsy on the 28th.

He was so good! He really was so finely balanced. Bold and humble. Pushy, yet a great listener. Book smart and full of common sense. Experienced and edgy. I have never met any doctor like him and think that he will be on this case until she is well or diagnosed (or both!!). Glenn was able to go to the appointment with me and he seems to like him a lot too. He ended the appointment, which I'm positive robbed him of his lunch break, by informing me that he was sending me the email again for my records and so that I would have his email address. I promised not to abuse it and he said, "I'm sure it's obvious, I like to talk. Emails are great for me because I can answer quickly without getting too chatty. Use it anytime!". To top it all off, I learned from Michelle that he is an active Christian. I am SO thankful for friends that listen to God's prompting (Amy, Michelle.....I mean YOU) and for this wonderful doctor, who is going to not only get the ball rolling, but make sure it makes it to the goal. God's hand has been so apparent this week. I just had to unclinch MY fists and reach out for it. It is so amazing and refreshing to see things turn the corner. I have an overwhelming peace and know that the Great Physician has her very thick chart on His desk.

This afternoon I was on the phone with my mom, filling her in on Dr. M, when I received a call on my cell phone from the pulmonologist's office. I answered it and the conversation went like this.

Nurse: "Hi, I got your message and we need the cardiologist to put the results of the echo in the system so that Dr. H can review them."

Me: "Oh, I'm sorry. They didn't do an echo."

Nurse: "WHAT? He diagnosed it and DIDN'T do an echo?"

Me: "Yeah, he explained that he didn't want to put her under general anesthesia for it when he would just watch it anyway. He will probably do it when she is 3 or 4."

....remember, I am the type that WANTS TO KNOW.... My instinct said PUSH FOR IT.. however, I wasn't going to push. God's timing seems to be working better for me.

Nurse: "Wait, 'til she is 3 of 4? Does he realize that she is having all of this trouble?"

Me: "Yeah, I mentioned it, but he didn't think it had anything to do with it"

Nurse: "NOTHING TO DO WITH IT? It has LOTS to do with it. This is why she gets sick so often. This is why she doesn't get over it like she should. Who was this guy? Where did you find him? They don't even have to use general anesthesia to do an echo. They just give her some "happy juice" and she gets sleepy for 45 minutes."

Me: "Well, he is with the same hospital you work with. I don't know"

Nurse: "I used to be a cardiology nurse. This is crazy. I need to go talk to Dr. H. He is definitely going to want an echo done soon. I just don't know what the best way to get one is. I don't want to step on toes."

Me: "Well, we happened to see a new pedi today who also wants it done. He will actually be calling Dr. H today to try to coordinate it for the day of the procedure since she will already be sedated, but has no problem scheduling it aside from that if he needs too. I'm sure he would be okay stepping on toes if you need him to."

Nurse: "I'm going to go talk to Dr. H. I'll call you tomorrow and let you know what we decide."

Crazy huh? This is the same office that blew me off, more or less, at our last visit and didn't think she even had a murmur. Now with three simple letters, "VSD", everyone's attitudes have changed. My quest all along has not been to prove that something was wrong. I, unlike the rest, was certain of that. The question, to me, was what was wrong. I am not certain that this is the answer to everything. I think she has a lot of little things that contribute to the big picture, but it feels SO amazing to have any answers. To have a doctor who is going to search, listen and learn with us is priceless. Thank you all for your prayers. I know that they HAVE been heard. I know that Kate's future rests in the palm of God's hand and I would want it no other way.