pH Probe Results

Overall, the pH probe was not too bad. Kate didn't see to mind the tube too much. I do think using the backpack was a life saver! She never once messed with the tube. Our biggest issue with the whole ordeal was keeping the tube from tangling around her while she tossed and turned in her sleep. I need to contact the clinic and advise them to give instructions on that before someone does strangle themselves in their sleep. When we went to have it removed, the removal of the tape on her face and neck was plenty enough distraction. I am not sure she even realized they were taking the tube out. She often tells us that her "boo boo's are all gone gone" and will point to her nose and iv site. She is such a good kid!

We met with the GI specialist, Dr. V, on Wednesday to follow up on the EGD scope and get the results from the biopsies and pH probe. Overall, everything looked good. There were no signs of severe reflux from the biopsies. The pH probe that she wore for 24 hours came back mostly normal. They consider anything below a pH level of 4.0, that doesn't bounce back up within 2 minutes (I think), to be reflux. It is normal to have the pH level drop below 4, it just shouldn't stay there for long.

Kate only had two episodes of "reflux" lasting longer than 2 minutes. One was just over 2 minutes and the second was for 13 minutes. While 13 minutes is a longer than normal time to be in "reflux", the doctor didn't seem to concerned. He doesn't want to do something drastic (ie. surgery) based off of one episode that didn't follow the rest of the results. There is a chance it could have been a mistake (ie. acid from drinking, eating, etc.). Over the 24 hour period, her esophagus was in "reflux" less than 3% of the time. I don't really know what normal is, but I got the impression this was fairly low. The results, coupled with the fact that her lungs have had NO improvement while being on high doses of reflux medicine, leads Dr. V to believe we are barking up the wrong tree. When I mentioned the possible cilia scenario, he seemed to think that it was much more likely.

He did go ahead and switch her to from Prevacid to Nexium for 12 weeks, just to see if she got any relief. He said if she didn't, it was most likely not reflux causing her issues. If it does help, then great! I was very pleased to hear these results for many reasons.

1. NO fundoplication, which is a pretty involved surgery that would be the next step if reflux was present.

2. Having the diagnosis on her file of reflux or GERD, as well as lung issues, causes everyone to assume she is aspirating, causing all of the lung problems. Now that we know that reflux is most likely not playing a role, it takes away that assumption.

3. Hopefully in 12 weeks, we will be 2 daily medications less and 1 specialist less!

My reason for agreeing to the scope, probe and biopsies in the first place, was to eliminate the guessing. If the medicines were not helping her lungs because her reflux was so severe, we needed to know that and do the surgery. If she wasn't having trouble with reflux, I don't want her on all of the medicine for reflux. I am very glad to have this done and to be able to remove that piece of the puzzle!

We go back to the medical center Thursday to follow up with AI (Allergy and Immunology) on the labs that were drawn, as well as with the pulmonologist. We will also go ahead and get her sweat test done while we are there to check for cystic fibrosis. We will also go ahead and draw labs for the test to see if the cilia issue is genetic (primary) or caused by the chronic infections (secondary). The following week we will meet with her new pediatrician to go over all of the news and make a game plan. Hopefully by the end of February, we will have all the answers we need to move forward with a plan that works! If I don't update (maybe even something fun?) before Thursday, I will try my best to get an update done then.

Pokes, Pinches and Probes

I am flat out exhausted, but I promised to post so here we go. I guess I will start at the top, since that's where the docs did. We arrived this morning at the Medical Center at 8:00, right on time. We checked in and were one of two families in the GI suite. Kate wasted no time charming the nurses. We were called back to pre-op where she continued soaking up all the attention. She put on a great show, talking up a storm and milking every single staff member for attention, stickers and coloring books. She got a little cranky wanting something to eat and drink, but was fairly easily distracted.


We met with the anesthesiologist, the GI specialist and the pulmonoligist to go over what all was going to be done. They let me go into the procedure room with Kate (what a great surprise), while Daddy-O stayed in the waiting room. Kate did so good and wasn't even anxious until she saw all of the equipment. They let me sit and hold her on the stretcher while they gave her gas. It was plenty strong enough, as the nurse and I had to turn our heads. She fought it for a few seconds, which seemed like a really long time, and then started getting sleepy. I kissed her forehead, told her I loved her and laid her on the stretcher. Daddy-O and I raced down stairs to get a bite to eat and made it back upstairs just in time for the GI doctor, who was first on deck, to be coming out.

By this time we were the only ones in the waiting room, a great improvement from the day surgery center, where there are people everywhere. Dr. V explained that he didn't see anything anatomically wrong with her digestive system. Everything was in it's place and there wasn't visible signs of inflammation. He said this is typical considering the dosing and length of time she has been on Prevacid. He took somewhere around 6 biopsies from her stomach, intestine and esophagus. Biopsies of the tissue will show how much covered up damage is really there. We should have the results from those and the pH probe at our follow up next Wednesday.

In between the doctors, a lab tech drew a bunch of blood for the immunologist, so that a) we didn't have to stick her while she was awake and b) we would have results for it all before our appointment in two weeks. That's a think ahead type of plan and I LIKE IT!!!! They were even able to get the blood from her IV (which they put in on the first try) so she didn't have to have another stick.

By the time we finished talking with him, Dr. H, the pulmonologist was done with his procedures. He explained that he too, found nothing wrong with her anatomy. Her airway was definitely inflamed and had a lot of mucous in it, but nothing he didn't expect with the upper respiratory virus she has right now. He explained that they took a washing of her lungs, where they wash the inside of her lung with saline and then pull it all back out and test the saline for different things. They also did a brushing of her lung, where they insert a small brush to collect some of the cells from the lung. They also did a brushing of her nose.

Dr. H had mentioned these tests at her last appointment, but didn't feel like they were necessary. I figured since she was going to be out they may as well take care of ALL of the what ifs and save us having to go through this again. I pushed with his nurse and he agreed to do it. The fellow that was with Dr. H walked the brushing specimens straight to the lab as soon as they had them. They looked at the samples to see if they had a good sample of her cilia. Cilia are the hair like structures in your ears, nose, throat and lungs that beat in specific rhythms to knock out germs, allergens, etc. At first look, there was no movement. They then realized they had collected them in the wrong solution. They did another brushing of each.

While they were taking the other sample to the lab, Dr. H explained that he still felt that she was one of those kids who just gets sick easy and gets wheezy with simple viruses. He said we would know more at the follow up in the next week or two, when all of the biopsies were back. About three minutes later, he and the fellow returned with different news. The new brushed cells that the fellow took to the lab where not the cells that they expected to see. I'll try to explain as best as I understand and if anyone knows better, feel free to correct me.

The lining of your lungs has a layer of water that houses your cilia. Outside of that layer is a layer of mucous. Germs, allergens, etc. enter your airway and get trapped in the mucous around your lungs. Then the cilia beat in rhythm to push out the mucous containing the germs, etc. preventing them from entering your lungs. The cilia can be damaged. This is what Kate's looked like. There are two ways that we discussed that this can happen.

#1 There are genetic problems that can cause the cilia not to function properly. This would lead to them being permanently damaged and unable to beat off germs effectively, allowing the patient to get sick very easily.

#2 The cilia can be damaged by a virus or infection. After the infection subsides, the cilia repair and become functional again. If they don't have time to repair before the next illness, they are just re-injured and don't beat off the germs they should. It is kind of like if you have a cut on your finger. The cells in the cut look different than your skin because they are damaged. The cut is trying to heal itself back to the "skin" stage, but every time you bump it or stretch it, you re-injure it.

Kate's cilia or the cells that were there instead, are definitely in the injured stage. The doctor made the comment that the cells were not what they should be and were damaged by the constant chest infections. I think I actually said, "AHA, so I'm not crazy!!" out loud. :) The question is which scenario is the cause. Both are very likely, both make a lot of sense. There is a blood test that can be done to see if it is genetic. The test, however, isn't always accurate. If it shows that it is genetic, then we will have an answer. If it shows negative, it doesn't necessarily mean that it isn't genetic, as it has a 25-40% accuracy rate with false negatives. The only way to tell if it is constant infections that is causing the damage is to do another brushing when she is "well". As the doctor said, since she is not ever "well" for long enough for them to repair, it might be a while before we get to that point. If the cilia were present and properly functioning when she is well, we would know that they are capable of repairing and functioning. I am not sure what the treatment for either situation involves or if there even is treatment for it. We will know a lot more once we get all of the biopsies back and go in for the follow up appointment. We will go ahead and draw labs for the genetic testing at her next appointment. This way if it is genetic (which with my allergy, asthma, ENT issues it very likely is) we will know for sure that it is. I figure if nothing else it keeps the pediatrician, Dr. McP, from stepping on toes again. You KNOW he would be ordering it the same day he saw the report.

During the second meeting with Dr. H, the GI doctor was placing Kate's pH probe. Shortly after, we were called back to recovery. I was pleased to see we were in a private room instead of the huge, open, "hi I'm your recovery neighbor. don't mind me puking on you" recovery room we were in last time. The nurses all LOVED Kate and continued to show her extra attention. She had a little trouble staying warm and keeping her oxygen saturation up. She is a lot like her momma and doesn't like to wake up after anesthesia. I will take that over the nausea, vomiting scene any day of the week. She did NOT want to open her eyes, but was coherent enough to nod and shake her head appropriately when we asked questions. "Do you want a drink?" got a big yes and "Are you ready to get up?" got a big no!

Eventually, she popped her eyes open, asked about her sissy and was ready to roll. She had some juice and sat there talking and carrying on like nothing ever happened. She checked her ankle to make sure no one had stolen her ID bracelet. She barely even noticed that she had both arms in splints, connected to one another across her shoulders, and a tube stuck in her nose. The nurse recommend that she keep the arm splints on until we take the probe out tomorrow. After explaining to Kate once that if she pulled on the tape or the tube, she would have a boo boo, she left it alone. She hasn't messed with it since, other than to point and tell me when she has a "boober".
She did great on the ride home, staying awake, singing and dancing to her video, but insisted on having a baggie so that she could pretend to throw up. She heard that was what it was for and she was not going to miss out. Strange kid! When we got home, she followed me over to the neighbor's house to pick up Leah's stuff. You seriously couldn't tell the poor kid had just been through all of the probes and poking she had. She is SUCH a trooper. She immediately wanted to eat when we got home and did just that.
She ate 2 Popsicles, goldfish crackers, 6 Ritz crackers, some juice and much to my dismay, 2 glasses of chocolate milk. She wanted a third Popsicle, but I cut her off. I put her down for a nap with the restraints on. I figure it is not worth repeating the probe if she pulls it out in her sleep. I know that if I tried to keep those things on the full 24 hours (think crucifix position) she would come undone. I have to be right with her every second she's awake anyway to make sure she doesn't get tangled up and to record every burp, hiccup, sneeze, cough, cry, time she lays down, squats, stands up, drinks or eats, so I figure it's safe enough to leave them off while she's awake. As soon as she woke up from nap, she asked for hot cocoa and some crackers.

The tube she has goes down her throat into the lower part of her esophagus. It measures how often acid hits it and what level of acidity it is. It is connected to a computer that I have to hit buttons on every time she engages in one of the above activities. I also have to keep a written log of it all that coordinates with the time on the box. It is seriously, far worse than hitting the button in the hatch every 108 minutes on LOST. Much, much worse. Have you ever tried to notice, let alone record, every time a very active 21 month old bends over, lays down, burps, etc. while trying to chase no more than 18 inches after her so the tube doesn't get pulled out? Wheh! The device came with a single strap to wear over her shoulder, but it is way too long and just gets in the way. I put the device in a little back pack for her to wear and it is perfect. It keeps the tube out of her arm's way and makes it where I'm not having to chase her with her "leash".

Tonight she's been a little more fussy. I can't say I blame her. Some of it is from the anesthesia, some from the Morphine wearing off. Some of it is because they pumped her so full of air....and chocolate milk. She has been through SO much in 21 months and quite a lot of it this week. She is such an amazing little girl and tolerates things so very well. I think I would be incredibly cranky just having that silly tape on my face, even without the tube down my throat. She's spiked a fever tonight and is having a lot of trouble with wheezing. Both are to be expected with as much irritation as her airway got today. I put her to bed in our bed and came in to check on her a few minutes later, only to find the tube wrapped around her neck, fairly tightly. She was okay, but it scared me pretty bad. Daddy-O had the idea to run the tube down through her splint so now when she flops around she just ties up her torso. Needless to say, she will be bunking with us tonight. I'm sure we will all be exhausted tomorrow. Kate and I will head back in tomorrow to have the tube removed. They said I could do it myself, but since I have to make the trip in to return the equipment, I figure I let them have the honors. If it would have saved me the drive, I probably would have done it!

So the game plan is to follow up with GI next week. I think this is important since we know her lungs have issues, but are not sure on the GI stuff. By the time we make it to the pulmonoligist, at the end of the week, we will know whether or not to rule out reflux. After we follow up with him, we will see the immunologist to get her lab results and then finish out with our pediatrician to make a final plan. It is so nice to have a little piece of the puzzle here and there. I am excited to watch it all come together and get my baby well!

Thank you God for a smooth day today, for watching over us all and for answers. Thank you for the best doctors and nurses, for answers and guidance. Thank you for friends and family that would take time out of their busy schedules to lift us up in prayer!

Amen

The Big Day

So tomorrow is "D" day, diagnostics day, that is. Kate is all set for her EGD scope, pH probe, bronchoscope and cilia biopsy, as well as a bunch of lab work. Last week she and Leah came down with this nasty respiratory stuff that everyone has right now. It's sort of croupy, sort of sinus infection like and very stubborn. We put Kate on oral steroids over the weekend, to try and prevent a bad flair up, despite the fact she wasn't wheezing yet. I say yet because she was definitely headed that way. I had wondered about putting her on them ahead of time to open things up, but didn't know how soon to pull her off of them to guarantee they wouldn't effect her tests. We went to Dr. McP on Friday and he said to put her on them for a few days (Fri-Sun) before I mentioned my idea. It was nice to have my "gut" match up with his advice. I feel like this change is going to be SO good and is a true Godsend. He also agreed to take on the girls as their primary.

Thanks to Dr. McP and the pulmonologist pulling many strings, we were able to get Kate's echo cardiogram done today. They basically said they wanted it done to clear her for the procedures. We tried it without any sedation, much to the cardiologist and echo techs uncertainty. Kate was awesome! She was totally still for the whole thing. The only time she wiggled was when she tried to dance to a song on the video she was watching. I did slip her about 10 M&M's, which helped. The cardiologist we saw a few weeks ago, Dr. W, stuck his head in and said he would be watching from his office and would meet with us afterwards. Usually you have to wait several days for the echo to be read, so this was a great surprise. He came in afterwards and explained that things were exactly what he suspected. She has a very small VSD. It was small enough the tech had trouble measuring the shunting (blood moving from the wrong side). He once again stated that this had nothing to do with her pulmonary issues. While I am not sure what the pulmonoligist feels, at least he now has numbers and facts to look at. It will be so nice to have everything on the table for the follow up appointments next week. It always stinks to go in and hear, "Well, let's see what such and such shows." I am sure I will get a copy of the echo report later with measurements and all. Tonight we are praising God for answers and good ones at that!

Both of the girls are still gunky. They have horrible junky coughs. Kate still isn't wheezing though and hasn't ran fever at all. We are praying the anesthesiologist doesn't cancel after hearing her. She started having green drainage today, so after a quick call to the pedi, she's on antibiotics, just to be safe. We should be starting things at 9:30 and it should take between an hour and an hour and a half. We will have to return on Friday to have the pH probe removed, which I'm told is quick. Then we have follow ups for the next few weeks.

Other than that things are alright around here. Leah has been a REAL toot lately. She has no regard to rules and is so unlike herself. Today I found her standing on the tank of the toilet. That was after she opened the door at the hair salon, while I was getting my hair cut, let Kate out, held the door shut and proceeded to scream, "Kate's outside playing", while Kate ran off through the courtyard. Yesterday she was supposed to be playing in the backyard and I found her in the woods at the end of the culdesac. She smirks when she gets caught. I know that she is jealous of the time I'm spending with Kate, despite the fact it is not enjoyable. I know I need to find special time for just us. That being said, we are on zero tolerance with her and she is "bored" because she can't go outside without one of us there. And she has a sore hiney. I hope that this passes soon.

Daddy-O is working like a mad man. I don't know how he keeps the hours he does. He is truly amazing! I went to the dentist this week...with both girls...by myself...for a quick cleaning. The appointment was wedged in the middle of two other appointments the girls had to be at so I brought them along. Two and a half hours later, we left the dentist. Like a two and a half hour dentist appointment isn't bad enough? Try it with two kiddos climbing all over you. If I had known it would be so long, I would have had Daddy-O come and take them to lunch. Needless to say, my teeth were not in very good shape, hence the extended appointment. I had root canals done on my two front teeth a long time ago and apparently one of them is totally damaged from the inside out. Joy! They think there is a chance they can save the tooth (isn't it already dead? Strange), but they aren't 100% sure. It will require oral surgery to fix and the dentist is going to study my x-rays and consult some of her colleagues on what to do. One of my back teeth has a huge chunk missing from me grinding it and that is going to require major work too. I can't wait to see the bill from that! At least I didn't have any cavities, right?

Well, that's about all for now. Here are some specific prayer requests for tomorrow, if you don't mind laying them before the throne!

1. For the procedures to go on as scheduled.
2. For guidance for the doctors.
3. For the things that are giving Kate trouble to be very apparent and lots of answers.
4. For safety.
5. For minimal effect on Kate, emotionally and physically.
6. For Leah's attitude and behavior.
7. For peace for Daddy-O and I.
8. For a clear game plan.

Thanks!

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.

New Year's Resolution

After writing about Kate's history, I was planning to write a post about what exactly is wrong with Kate currently, but something has become painfully obvious today. Apparently she's not the one with issues. It's me. As was pointed out so clearly at a doctor's appointment today, it could be worse. Someone will learn today that their child has cancer. Apparently I have issues, of the emotional/mental sort. As such and the coincidental timing of this "finding", as well as the feeling that people are flat out tired of me, I am making a New Year's resolution.

For 2010 I will:

- Not talk, blog or post to Facebook about Kate's health.

- Not seek advice, referrals, support or opinions regarding Kate's health.

- Not research possibilities with her health.

- Simply answer, "She's great" when asked about Kate. If you catch me answering differently, I owe you a buck.

- Will take Kate to the doctor when she is sick, but will not interject my opinion, feelings or concerns.

- Quit seeking the bigger picture and simply put "band-aids" on Kate's symptoms.

- Give her the medications that which ever doctor we saw last says to and not question what other doctors have said, nor the effect these medicines may have on her.

- Attempt to treat Kate in the manner that a home health nurse would (when she is not feeling well) and not let my Mommy emotions get in the way. This is to include not complaining, over reacting, worrying and all of the other little differences between a mommy and an employee.

- Quit letting these little things get in the way of my relationships, dreams, goals, plans, spiritual life or personal life.

- Attempt to regain my sanity and mental health.

Please feel free to assist me in these goals, as it will take a little while to make them my norm. Wish me luck! Here's to a fabulous 2010!

The Beginning of the End

At a doctor's appointment on Wednesday, I was reminded that things could always be worse. As true as this is, I still feel like I need to get some things off my chest. Below is an excerpt from a letter I will be sending to the pediatrician. These are my thoughts and feelings today.

"After leaving your office on Wednesday, I felt horrible. I have had a huge guilt trip just from the thought that I could be so inconsiderate of others, while being concerned for Kate. You are exactly right. It could be so much worse. Like you said, it could be cancer. It could be so much worse than cancer. After close to a dozen trips working in medical missions in Honduras, I know this first hand. I have worked alongside doctors as they treated elderly patients, who were seeing a doctor for the first time in their lives while on their death bed. I don’t know why God chose for me and my children to be born in such a blessed and privileged country, but I’m thankful that he did. I know that while Kate and Leah both have had “little issues”, they would have had an entirely different outcome in a third world country. I write this not as an over privileged, closed minded person, but out of sincerity.

Cancer sucks. It is most certainly, a horrible disease. While I personally have not yet had to deal with it, I have watched my uncles, grandparents, childhood friends and even my mother battle with it and in some cases, lose their lives to it. It can have huge effects on the patient, as well as the families surrounding the patient. The patients can wind up on so many medications that you have to wonder which is worse, the disease itself or the side effects. The medications can have long term side effects, some of them not even known. It can affect the patient’s personality and behavior. It sometimes makes children unable to participate in normal childhood activities, like going to preschool, Bible class or the playground. They often spend many days of the week in doctor’s offices, labs or hospitals. They often miss out on birthdays, holidays, celebrations and vacations.

It most certainly affects the other siblings in the household. The constant care of the sick sibling, lack of attention shown to them, constantly being drug to appointments, being made second priority and stressed out parents eventually take their toll on them, too. Sadly, they somehow begin to feel less important.

The effect it has on the parents can be detrimental. There’s the financial stress of what bills to skip this month and what to live without to pay for medical care. There are the sleepless nights and never ending days. There is the constant giving of medications, soothing and comforting the child, scheduling and getting to appointments. Sometimes careers are put on hold so that one parent can stay home and tend to the sick child. One parent may even have to pick up a second job to help offset the expenses. Marriages are put to the test and pushed to the brink. Parents are forced to make decisions they aren’t formally educated to make, based off information from so many different sources, about the well being of their child. It seems at every turn there are skeptics, critics, conflicting advice and doubt. It is enough to make anyone go crazy.

Sure, there are the good days, when everything seems all too normal. You let down your guard and breathe a little easier. You try to soak them all in and feel normal once again. In the back of your mind though, you know you are still on that dreaded rollercoaster. When the bad days come, you put everything on hold. Your priority becomes your child, not your career, your house, your family. You do without so many things like sleep, time for yourself and often, little things like a meal or shower. You eventually lose yourself. You don’t know who you are apart from being your sick child’s home health nurse, chauffeur and advocate. Your life seems to vanish. Despite the fact you know this is a season of life, there are days that you can barely hold your head above the water for that 24 hour period.

You wonder how other people do it. You see people that have it so much worse than you do. You see people that have it so much better. It doesn’t change where you are at though. To you, for now, this IS your life. Sometimes (or maybe for some people) the LITTLE things can be the BIG things. Despite the fact we aren’t dealing with BIG things (cancer), our LITTLE things (asthma) suck too. I am, by no means, trying to say that asthma is as bad as cancer. Looking at the list of effects that LITTLE asthma has had on our lives, I can’t imagine what it would look like for the parent of a cancer patient. I know that if I were to face something bigger, it would put it all in perspective and our little things would probably become obsolete. It still doesn’t change the fact that right now, this is our life."

It makes me sad to close out this chapter in life, but for now it's what I have to do. I can't handle any more negativity in my life. I can't handle being told that "it's not good to give my child these medicines" when she is needing them and then "there's nothing else you can do" when she doesn't. If there is nothing else to be done, then I need someone that will simply warn of the effects once, prescribe the medicines and let the rest be. I don't need the doubt. I don't need the stress. I don't need the worry.

So What IS Wrong, Anyway?

So I get asked often, "what exactly is wrong with Kate?". I may decide to pull all of this information down at some point. I'm not sure what is too much for a blog. To answer this question, I am posting excerpts from some of the info I've pulled together for all the specialist appointments. My hope is that this gives you a little insight into Kate. My prayer is that someone will read this and will have gone through something similar and will be able to advise us as to what to do next. Far fetched, I know.

1. Kate has had horrible, chronic diaper rash. She has gets a bright red, painful (to the point of vomiting) rash that has blisters at times, swollen areas, and often includes open sores. It is very raw and bleeds a lot. It happens every 2-3 weeks, if not more frequently and lasts anywhere from a day to several weeks. It is usually not associated with any other symptoms (ie. Diarrhea). We do not let her drink juice and have watched closely for foods that might be causing this but there doesn’t seem to be a common denominator. Her bottom can go from being totally clear to horrible burns with just one diaper. We are VERY cautious about changing her immediately after she has defecated. She has always been prone to diaper rashes, but the sores and extent of it have gotten worse the older she gets.
2. Kate had a labial adhesion a couple of times when she was younger. (5 months old)
3. Her umbilical cord had to be burned off because it still hadn’t made progress after 1 month. She also had a reaction to the silver nitrate that caused severe burns around her naval. This may have been caused by a Band-Aid the doctor placed over it to protect her clothing.
4. She was in physical therapy through ECI for being very pigeon-toed, bow legged, standing on the tops of her feet, funny gait, etc. She has outgrown most of this with age and walking, but still has some signs of it.
5. She has had several times where a large lump shows up on the side of her head. The first time it looked like someone had placed a golf ball under her scalp. She is allergic to mosquito bites and the doctor thought that she was just getting bit in very vascular areas, causing severe swelling. It is usually hard as a rock, but doesn’t hurt to push on it, nor does it turn blue like a bump would. It has always gone away within a week. (first time at 13 months old)
6. Her blood counts seem to be odd often. She’s had a LOT of labs drawn and I don’t know if there have been many, if ANY, times they did not show a “virus”.
7. She had a bad “virus” that caused a temperature of 104+ for a weekend. Her labs showed she was neutropenic (ANC 900). When her temp came down, it ran around 97 for a few weeks. It took quite a while for her labs and temp to come back up. (11 months old)
8. She has had goopy eyes and pink eye often. (earliest 3 weeks old)
9. She has had sinus infections (or at least lots of really nasty, green drainage) since before babies are supposed to have sinuses.
10. She has had MANY “viruses” (stomach, respiratory and skin).
11. The doctor was fairly certain she had RSV, although the test never showed positive, despite 3 different test dates. (5 ½ months old)
12. She was a very wheezy, rattle-y baby. Her reflux was not the classic projectile, but rather came out of her nose 90% of the time. She would also choke and hold her breath to the point of turning blue, often. (as early as 2 days old)
13. She has been diagnosed with a heart murmur and we are planning to see a cardiologist for further evaluation. (first noticed 18 months)
14. She has a lesion on her right humerus that has shown in some of her chest x-rays. We had an arm x-ray done to rule out anything bad and it came back showing it was just a spot that grew funny.
15. She had an upper GI when she was 1 month old that showed severe reflux.
16. She’s had many chest x-rays because the doctors constantly think she has pneumonia, but she has yet to be diagnosed as having pneumonia. Every time the x-ray comes back showing something “viral”. I am not sure if she has had a “clear” x-ray to date.
17. Her illnesses do not seem seasonal. She was just as sick in the spring and summer as she is in the fall and winter.
18. Her labs show anemia (RDW-CV always high), but the doctor is just now treating this with iron.
19. Most doctors feel that Kate, “looks way too good to be so sick”.
20. There are many times that Kate sounds horrible and her O2 saturation is in the high 90’s. Other times she does not sound as bad, but will have O2 levels in the low 90’s.
21. Kate's hands have looked like this (see below picture) for the last 3 to 4 weeks. At first we assumed they were dry from the cooler weather and running the heater. Then we thought it might be a reaction to her medicine changes. They look like a one day old baby or a very elderly persons hands. Then skin is very fragile and sensitive. It's almost painful for her when we touch it. I was able to take this picture to the pediatrician yesterday and she diagnosed her as having eczema. So now she is on a steroid cream.

Here's a little history on Kate.

1. Kate was born via c-section at 38 weeks and had no complications before birth.
2. She had no problems at birth and was 6 pounds, 15 ounces and 20 inches long.
3. Kate was breastfed only until she was 15 months old.
4. She started table food by the time she was 6 months old.
5. She has been “ahead of the curve” on all of her milestones. At 18 months she can jump, hop across the room, hold a pencil correctly and uses silverware properly. She has always had amazing fine motor skills.
6. At 18 months, she speaks in sentences often and asks many questions (where’s my…, what are you doing, why, who is that, etc.).
7. Kate does not attend any type of childcare. She has always stayed home. She does not even go to Bible class or the nursery during activities. She has one sister, who until September did not attend childcare or school either. Her father and I both work from home. She has never played on a public playground, other than a handful of outdoor parks. She has had very minimal germ exposure and has what would appear to be very minimal germs carried into the household.

So who really knows what IS wrong with her.

I LOVE Roller Coasters....

...just not the emotional ones.

Today my Mom and I took Kate to the pulmonology clinic at the med center. We got called back and were in a room within 10 minutes of arriving. That place simply amazes me. They are most certainly a well-oiled machine. The nurse came in and took a brief history and within minutes the doctor was in. All in all, he spent about an hour with us. Here are the main points we gathered from the appointment.

1. Reflux may or may not play a role in her asthma. There is no test to see if she aspirating on stomach acid, food, etc. or if it is causing her lung issues. According to him, there is not a huge chance she is. This is very different from what every other doctor has said. Most have blamed her "suspected" reflux as the culprit for a lot of things. We aren't even sure she really has reflux at this point.

2. She IS on oral steroids far too often and we need to fix this. The best way to do this is through daily control medicines. She is on two currently and we are waiting to see if we need to go up on the dosing. She caught a upper respiratory bug last night, so this will be the first big test for her current doses. Usually within 24 hours of a snotty nose showing up, she is full out retracting, on breathing treatments every 3 hours around the clock for a week + and oral steroids. If she does wind up on oral steroids from this virus, we will be increasing her daily steroid.

3. She looks too good to be too sick. We get this SO often and while it is true, I feel like sometimes we get pushed off because of it. She is gaining weight fairly well and has not had any hospitalizations yet, so they consider her healthy.

4. The most likely "diagnosis" is that she falls into a class of kids who "wheeze with viruses". They wheeze every time they get a virus. Viruses get less frequent and less severe and usually fade away by the time they are 5. The viruses are fewer in the spring and summer and worse in the fall and winter. This is not true for Kate. She was JUST as sick ALL spring and summer, if not worse, than she has been for the fall and winter seasons. The only thing to do for this is control what you can, treat symptoms and wait for them to out grow it.

5. There is a slim chance that she could have Cystic Fibrosis or a problem with the cilia in her lungs and throat. Cilia are the hair like structures that move rhythmically to remove germs. The only way to test for that is to put her under and take a biopsy from her throat. I don't think we will do this yet, as he didn't say this would be possible to do while she is under for the other procedures. I also am not interested in doing too much to her just because she is sedated. The test for CF is a simple sweat test where they measure salts in her sweat. We will be scheduling that in the next month or so since it is simple and will be very simple to rule out CF.

6. According to him, her immunology isn't playing any role in this. I find that very hard to believe, but I am no doctor. He felt that since the immunologist didn't want to see us back for a year, she doesn't have immune issues. Also, her chest x-rays didn't show any "big bad pneumonia" which would be there if she "really" had immune problems.

7. There is a good chance that she will have allergies (I have HORRIBLE ones) and that will probably start showing up by the time she is 4 or 5. That is also about the time she should be outgrowing the "virus" issues. If this does become a problem, there is a good chance she will have continued issues with asthma from the allergies.

All in all it was a frustrating appointment. The doctor was very nice and was kind and compassionate, but I very much so left with the feeling of "and you came down here why". He made the comment that we were "making the rounds with the specialists" and while I KNOW it is just my insecurities, it hit me wrong. I think he meant it in the sense that we have a whole lot of appointment lined up. Believe me, I know. I am not scheduling appointments with specialist every single week because I'm bored. Our pediatrician is scheduling them as a result of her findings. What should I do? Not go? Write it off? "Ma'am your daughter has a heart murmur that I think should be checked out"... "Nah, we're good, but thanks". Believe me, if I had one week without an appointment, it would be heavenly. I promise, I DO have more of a life than that. If not, I promise I would take up knitting or basket weaving or sleeping!

Like I said earlier, he was not just rude and cold, he did try to be kind and caring. He said several times that he realized I was hoping for an answer and unfortunately, he just didn't have one. He commented on how well she sounded today (kind of like taking your car to the mechanic?). He didn't deny anything I was saying. It wasn't that he thought she was a perfect, normal kid. He said he totally gets what we are dealing with. There just isn't a big "key" answer. He looked over the list of issues we've had with Kate over the last 19 months and said that he didn't feel that any of them had a link to any other one. Things like the diaper rash her was quick to say that kids have sensitive hineys. Her constant viruses might be a little high for a child that isn't in daycare, in his opinion, but still nothing big. Most of the other things were unimportant or isolated and he didn't hear a murmur in her heart (although I heard it even tonight).

The action plan at this point is that he is going to do a bronchial scope in mid-January while she is under general anesthesia for the EGD scope and pH probe that GI will be doing. This will just check for damage or abnormalities. If the EGD scope and pH probe show that her reflux is out of control, we will treat it and hope that the asthma settles down. Otherwise I guess we keep working on getting her asthma controlled with daily medicines.

I hate that she is on so many medicines. I HATE that she is on such high doses of such strong medicines. I hate that she is on so many strong doses of medicines and is still not getting relief. Appointments like today tempt me to take her off all her medicines and treat her like a "normal" child. You know, let her play on public playgrounds (which she has NEVER done), let her go to Bible class, or heaven forbid, the church nursery. I mean, if she doesn't have "any" of these problems, why treat her for them? The medicines can't be good for her long term and they sure aren't cheap. Part of me feels like we might be over medicating and covering up for how bad she might really be "drug free". Maybe that is making her harder to diagnosis. I don't know.

Leah, Kate and I all are sick. We all have upper respiratory bugs. We all feel lousy. Leah has had it for over a week, so I took her in to Dr. F tonight. She has been sick around 10 days and it just isn't quite clearing up. Dr. F felt she was on the upswing, but wrote for an antibiotic since it is Christmas week and said not to hesitate if we needed it. The appointment wound up being a good time to touch base with her too. I waited until she asked about Kate and let her know what the pulmonologist had said. At first she was a little frustrated he wasn't doing testing or anything. She then refocused for a minute and came back with some great answers. She said, "You know the reason I wanted her seen, which is the same reason you were concerned, is that she is on oral steroids SO often. He agreed with that. He is wanting to get her daily medicines straight to try and make that happen. That was our goal". Very true!

When I told her my frustrations with the all the medicines with no change in results and confessed the fact that I was tempted to pull her off all of them she had this to say. "Whether he said it or not, saying that she looks so well should be a compliment. With all that she is dealing with she should have been hospitalized and she should look worse. You have done an amazing job keeping her healthy and for that you should be proud. Let's not see how bad she "could" be". I do not add that to toot my own horn, but I know there will be many days in the future that I will need to read that again. It is SO hard to know if you are doing the right thing. I think her point hit home. How much worse could it be?

I don't mean to sound negative today, despite being tired and sick.... and sick and tired. Every single specialist appointment ends with one of two results. #1 - "Go see _________ (another specialist) and let me know what they say" or #2 - "I don't really see anything. She'll out grow it when she's 5". She is my last baby and I really don't want her to grow up quickly, but if 5 is really magical then bring it on! Every time I leave an appointment, I praise God that we didn't hear the dreaded words, "Your daughter has __________". Unfortunately I often feel that if we had a diagnosis to work with, it would make my life so much easier. At least we would know. We wouldn't worry. We wouldn't search high and low.

I know that there is a really good chance that there isn't a simple answer or an answer at all. I know that God has a lesson on the other side of this for me. But for now, it is simply hell. It is seriously emotional, physical, spiritual torture for me. I'm too type A. Too controlling. I can deal with facts. ANY facts. Just give me facts. The what if's, worries, endless prayers, sleepless nights, guilt, stress, should I"s, why didn't we's.... they just don't end. It is ALL consuming. It has become my life. I keep saying that I'm done with all the doctors, tests, procedures and such. I make a strict plan to ONLY take her to the pediatrician and ONLY under this criteria. But then she gets sick or gets a new symptom. Could this be the missing piece? I take her in and they "find" something new and usually unrelated and I can't ignore it. I obsess. I research. I worry. I stress. Then the appointment rolls around and I get brushed off. Only to hop back in the line for another ride on the roller coaster.