Confusion

The older I get the more things I run into that make me go huh?

I am in the process of getting Evan set up with a pediatrician. I have been a bit lax about it due to the move and settling in and potty training but we really need to get his health care system set up and in place so that he can start physical therapy again among other things.

Where I am running into problems is that there are pediatricians aplenty that take Tricare, however none of them are considered primary care managers by Tricare. There are also loads of family practice doctors that take Tricare. Guess what! None of them are designated PCMs either. In fact there are no PCMs in a 50 mile radius! How insane is that?

We, of course, have been on the phone questioning this apparent oversight but it is hard to get things done when you get a different answer every time you call. What I don't get is why are not family practice doctors and pediatricians not automatically designates as PCMs? When it comes to the doctor food chain they are the lowest on it. It only makes sense.

I guess that is where I go wrong, assuming that an insurance company would do anything that makes sense. Another thing that puzzles me is that my husband's coworkers have doctors. Why is it only now that we are not able to get one? I can feel my head starting to ache.

I know that we will eventually get a doctor set up for the kids and us. We will be very squeaky wheels, I can promise you that much.

The appointment

Evan yet again amazed me with his maturity. These kinds of appointments used to be stressful and frustrating when he was little. Heaven help you if you had to wait any length of time, because by the time the doctor came he would be fried.

This time the cardiologist was running a bit behind (which was very unusual, normally we are seen right away). We ended up waiting in the exam room for about a half of an hour before the technician came in to interrogate Evan's pacemaker. Then it was another 10 minutes of waiting before the cardiologist was able to come in and see us. The entire time Evan entertained himself with the three cars that I had packed to bring with us. He had a blast with them and got very creative with places to drive them.

Later on when he was having his echocardiogram done he was so amazingly still that they were able to get shots that had been very hard to get previously. I was also able to stand next to the bed instead of having to lie down with him to help hold him still. All he needed was some dried blueberries and a cartoon on the tv. His cars and a flashlight also helped some.

Everything in his heart is looking good. There was the hint of possible collateral arteries forming, but until they cause a drop in his oxygen saturation levels nothing needs to be done and even then it is a cath procedure and not a surgery.

The cars going "down the hill."

The cars being driven on the counter top. I had to remind Evan several times that we did not drive cars in the sink or the garbage cans.

This was the funnest driving place of them all. He thought it was hilarious to put all the cars on the chair, twirl the chair and laugh as the cars all fell off the chair.

Evan getting his echocardiogram and being an angel in the process.

Evan and the grateful recipient of the lace scarf that I recently finished. Evan kept mugging when I was trying to get this picture and this was the best face I could get out of him. *sigh* Kids!

Movin' on

This has been hanging over me for some time, we may be moving next summer. I have known about this possibility for a long time now, it is very much a part of the life of a military family. I think that this will be one of the hardest moves we may have to make for one main reason: we will be leaving some very amazing doctors and other health care people behind.

These are people that have cared for Evan since his birth. They have helped guide us through some very rough and scary times. They are also very nice people and have shown that they truly do care about Evan's welfare. I look forward to each visit that Evan has with them. They have touched our lives in so many wonderful ways.

I can email friends and talk with them on the phone, but I know that we will not be able to do that with Evan's doctors. They have to maintain professionalism and I get that which is why it will be sad when we have to finally leave. I feel like they have the right to see how Evan turns out since they have put so much energy into his health care. That is where this blog comes in, it gives me a great non intrusive way to allow them a peek into our lives (if they choose to) with out having to cross the line into being a stalker patient.

Can you believe it?

It has been a whole year since I wrote this. I can't believe how fast the year has gone by, it is so amazing how much Evan has grown. When we were at my inlaw's house all the boy cousins would take baths together. Evan was actually chunkier looking than his cousin. He has gone from below the 5th percentile in weight to average. It was a hard road but I am so glad that the journey is done.

BeforeAfter

Clarification

My previous rant was not at all about the dental insurance company. Our dental insurance while not stellar, as far as coverage goes, they still have been very prompt with approvals and taking care of bills. I heart our health insurance in a big way. Sometimes it is a bit slow with things but they have an unparalleled coverage. We have not payed a penny out of pocket for any of Evan's medical care. There are co-pays for prescriptions but only if you use a civilian pharmacy.

We do need to figure out a better system for health care, but I am not really sure I trust our government to run the health care industry. There are waiting lists for care in places like Canada and England. People can die while waiting for diagnostic tests or surgeries. Patients are denied services because they have a slightly higher BMI than the rules say they may have to get treatment. I am also not certain that we would have the level of innovation that we enjoy in the US. There are so many non invasive treatments available for heart defects that are not available in other countries. I wish that there was a clear solution to the health care crisis.

A billing nightmare

I have expressed my annoyances with the dental school that we used to get Evan's teeth taken care of but my frustration level has now reached a new high.

We got a bill for the services rendered. We knew that a large portion of the bill would be covered by the insurance so we just ignored it, waiting for them to send us the real bill that had our portion on it. My husband did take it in with him to work so that the gal that helps people out with insurance issues could check on the status of the insurance claim. It turned out that a claim had not even been submitted.

We then get another bill, telling us that we were past due. Of course that freaks us out a bit so the insurance gal calls the dental school and tries to get them to tell her what is going on. They ignore the calls. They also ignore calls from my husband. Once my husband steps up the frequency of calls they finally call ME! at HOME! (in the middle of my attempt to nap) which is not where they had been directed to call.

I engage in an inane conversation where we establish after several repetitions that I am not happy that we are getting bills that are saying past due and I am very unhappy that we are getting bills before the insurance company is billed. My favorite quote of the conversation was "Well I am not the one sending out the bill, it is done by computer" I had steam shooting out of my ears at that point. I didn't care who precisely was sending the bill or how it was sent. I cared that it was being sent and that they were threatening our credit in the process. I did not want this bill to go to collections.

I found out after my husband got home from work that there were other issues that I had not had a chance to be told about. Apparently there are some lines in the bill that are quite shady, teeth that were worked on that I was not told about ect. They also stuck in a charge for the gingivitis visit. I knew that we would have to pay for that since it was beyond out coverage but I had thought they would bill us in a different bill instead of hiding it in with the bill for a different procedure. They are going to get an earful from my husband and a complaint filed against them with the insurance company. We are so not going to be using them ever again for any kind of dental work at all. I have had it and am tired of being talked down to and being cheated out of money.

Annoyances

One of my least favorite things to do is having to deal with the ordering of medical supplies. The companies will give you too much of one thing and barely give you enough of another. When Evan had his feeding tube it was the bags for his feed pump that were the choke point. We got 30 and that was it. There were always one or two bags in the box that were bad for one reason or another which prevented us from building up any kind of minimal surplus.

At least with the feeding supplies we did not have to wait for authorization each and every time we needed a refill. Evan's test strips for his INR testing machine are that way. When we first got the machine we got a big box of 48 strips plus a plethora of lancets (we have still not run out of our initial supply of those). As the number of strips dwindled I started looking for a place to get refills. Once I found a place we had to jump through all the new patient hoops. Once all that was done I found out that I could not order a nice big box of 48 strips, those were only for doctor's offices. I had to get Evan's in boxes of 12 and I was only given one box at a time.

I thought I was doing good this last time by starting the whole reorder process when we were halfway through the box. We test every other week, so ideally the box of 12 would have lasted six months. Evan had a string of highs and lows that meant testing a lot more frequently and we were down to one lone test strip. I was about to call the company to chew them out for taking so long (although it was most likely my insurance's fault) when I finally got the call that they are on the way. This time I am getting a bounty of two glorious boxes of 12 test strips. I am giddy with joy right now.

Tags: INR, test strips, insurance, frustrations

We are back!

This was a snap compared to everything else that Evan has gone through. The new hospital has a play room for the kids so the waiting for the procedure to start was not too irksome. A Child Life specialist even came by and did some medical play with Evan and another kid that was in for a procedure too. Evan still fought the gas mask to put him under and it was hard keeping him on my lap while he went under.

It was a quick procedure only about three hours. He came out with two crowns (one silver and one tooth colored) and two fillings. His cardiologist came by to see how he was doing which was very nice of her since officially he was not really her patient. Evan charmed all the nurses as usual and did not throw up the juice he was allowed to drink. We were home around 1:30, in time for me to get a nice nap after wolfing down lunch at home.

Here is a picture of Evan's new smile. Just kidding!



Evan coloring in his Thomas coloring book. Thomas was the second word out of his mouth upon waking up. the first was cars. I guess I know where I stand is his life right now.

Tags: hospital, dentist, child

What a difference six months make

Today Evan had his big semiannual cardiology work up. The hospital where he gets his heart stuff done is a bit odd in that it is actually three different hospitals with the same name. They recently moved all the kid stuff (birthing and the NICU which were already in the one building and pediatric sub specialties plus the PICU and pediatric hospital rooms which were not) into one building. Now it is like a children's hospital with out being an official children's hospital. This was our first time at the new place and it was a bit strange at first but it was nice being in a shiny new examining room.

The biggest thing I noticed was that while driving there I did not have to go up the terror inducing hills that are very common in San Francisco. These are hills that you do not want to be driving a standard transmission on. These are hills that you break into a cold sweat if you see a person ahead of you on the hill because that means when they stop at the top of the hill for the four way stop you will be stuck behind them only partially up the hill, praying that you do not slide further down. These are hills that have sidewalk stairs for pedestrians. These are hills that make you thank Heavenly Father every time you successfully make it up them.

The appointment went so much better than I had expected. Previous to this Evan has been quite squirmy and very angry when he had to have his pace maker interrogated. All it involved was holding a large computer mouse like device over the spot where his pacemaker was. It did not even have to touch the skin, but having it hover near him just pissed him off worse than me holding him down and putting it against his shirt.

This time around he quietly accepted the pacemaker thing on his stomach with out a peep. You could have knocked me over with a feather. I was all tensed up for a fight to the finish with him. He was entranced with the screen of the computer and thought it was cool that he could see the squiggly lines of his heart beat. I told him that it was his heart beating and he kept asking to see more heart.

The even bigger surprise was to come. He had to have an echocardiogram and for the most part he stayed absolutely still. Again, in the past it had been a bit of a struggle to get him to be still and not cranky about the whole procedure. I had to bribe him with candy so they could get decent pictures with out having to resort to sedating him. I think I could have done this one with out the candy at all.

Everything is looking good with his heart. He charmed the heck out of everyone as usual, he loves his cardiologist since she has never actually given him a shot or done anything at all painful to him. Even the pacemaker guy was falling for him. We go back in another six months.

My son's pediatrician knows I listen to Weird Al

I brought my iPod with me last visit to the pediatrician's office. I knew that Evan would have a freak out and was hoping that the novelty of being able to play with mommy's much coveted toy would keep him distracted. It did not work for more than five seconds for Evan but Harry was entranced enough that he only threatened to pass out once.

While I was getting Harry dressed again (he is average for weight, has a huge head and is 25% for height so he is a shortie) the good doctor asked if he could look at my iPod. He had bought them for his kids but they were not good at sharing (typical teenagers). He wanted to see what all the buzz was about. He tried out the earphones and noted that he could not hear Evan sobbing any more. I guess that is why iPods are so popular with parents, they are good at drowning out the sounds of a screeching child.

He handed it back and then much to my chagrin started to discuss the song that had been playing. In my haste to entertain the kids I had pushed play on my Wierd Al play list. Had I known that someone else was going to listen I would have picked something a bit cooler. Although, quite honestly, I am not sure I really have any "cool" music. Even if I had, it could have been lost on the good doctor any way. He grew up in India and I have a feeling that his taste in music is quite different than mine is.

Surgery Day

You wake up early in the morning. It is still dark out and your body rebells at having to leave the comfort of your bed. You did not sleep well last night, you were too anxious. You and your husband decide not to have breakfast since you both are really too nervous to eat. You would probably throw up on the drive to the hospital any way. Eating at the hospital will provide a much needed distraction. The awfulness of the food will give you something to talk about besides the surgery.

Waking your child is no easy feat. He too rebells at getting up so early. You all quickly walk out into the morning chill and put all the bags into the car. There is one for him, filled with special toys that you got especially for the surgery. The other one is for you. There is a change of clothing and also things for you to do while you wait. Today there will be a lot of waiting and you know that you will quickly tire of the many things in there. Your mind will be with your child in the operating room.

Traffic is light. You make it in plenty of time and have no trouble finding parking. In the waiting room your child proceeds to charm all the older people there. He is the only child and he milks all the attention that his youth and cuteness gets him. His name is called and you are taken back to a room where they prepare him for the surgery. Height weight and vitals are all taken. The anesthesiologist comes by to ask you if you have any questions. Your child's surgeon comes by to answer any last second questions.

Then you wait. Your child is getting cranky from the lack of sleep and hunger. You are told that the surgery is delayed due to an organ transplant. You try and keep your child entertained grateful that you have a little more time with him before the surgery, but you also would just like to get the whole thing over with. Too soon it is surgery time.

You are all taken to the OR. You wait in a tiny room while they are getting everything set up. Only one parent is allowed back to hold the child during the anesthesia induction. As the mother you claim that right and are given a zip up suit to wear along with a hair net looking hat. Your child starts to get anxious the instant you enter the OR. He remembers it somehow from the previous times that he has been in there. You try and comfort him as best you can while you lay him on the operating table. He cries as the mask is placed on his face but soon he gets sleepy and is limp. The nurses promise to update you and your child's surgeon pats your back telling you that he will do his best to give your child the best outcome possible. As you leave you take one last look, praying that you will get to hold your child again.

Gabe and Zoe are having heart surgery this week. Gabe's is May 15th and Zoe's is May16th. Please take a little time and say a little prayer for both the children and the parents. They need all the strength that they can get in this trying time.

Nurses Day

Today is Nurses Day, in honor of that I am posting a tribute to my favorite of all the nurses that has cared for Evan. Alice is the nurse practitioner that works with Evan's cardiologist.

I can't remember the first time I met Alice. She was one of many people that came to check on Evan on a regular basis. I was tired, scared and overwhelmed. Alice soon distinguished herself from everyone else by her kindness. She was a mother too and was very understanding about what I was going through. She was especially good about explaining every thing that was going on, never making me feel like I was asking a silly question.

Through the years she has always been there for us, helping make sure that Evan was getting the best health care possible. She is the one that did all the leg work to get Evan his home INR testing machine. Whenever I have a question she is very prompt in answering, I never have to spend days waiting for answers. When we need something taken care of there are no worries once Alice is on the job.

When we go in for appointments I am happy to see her smiling face. Evan is also very excited to see her and show off his new developments for her. It is great to know that we have someone like Alice looking out for Evan's health. Nurses are awesome!!!

Figured it out

Well I now know where Harry got his mouth virus from. I was right that it came from a kid in nursery. He is looking better but he still has some spots that are still healing. I am debating if we should keep him home on Sunday or not. The virus also spread to his thumb and finger which he had been chewing on extensively before I taped a sock to it to let it heal. It will be nice when this is over and he is a lot less cranky.

Poor Evan and Poor Harry

We made a quick and unexpected trip to the pediatrician's office this morning. Harry had some white gunk in his mouth that alarmed me by growing quite a bit over night. I thought it might be thrush, but apparently it is some harmless virus that will eventually disappear on it's own. I guess that is why our pediatrician gets the big bucks and Google is just a simple search engine.

While we were there Evan was freaking out thinking that he was here for another shot. I reassured him that he was not going to get a shot. The doctor reassured him that he was not going to get a shot. Then the doctor mentioned that the AAP had decided to recommend routine Hepatitis A vaccination and wondered if I would like to have my kids get it right now since he had the time. I said yes and Evan's fears were confirmed since he did get a shot.

I wish that I had at the very least only had Harry given the shot. I feel like I lied to Evan even though it was entirely unintentional. It could have waited, it is not like we are never in the pediatrician's office, although visits of late have become rarer. The shot also came soon after I did Evan's INR (which was finally with in range after three long weeks of being high) so he ended up with two pokes this morning.

I am going to have to go and disinfect the toys in the nursery closet. That is most likely where Harry for the mouth virus thingy from and even if it was not, it is smeared all over the toys now. It is a good thing that there is a lot of germaphobic people out there so that there are plenty of easy to use products out there for me to use.

Gingivitis (updated)

Evan started having foul breath and pain while eating this weekend. I scheduled an appointment with the dentist that is going to be doing his massive mouth overhaul in June since I was worried that he had an infected tooth or something. It turns out it was bad gingivitis (I had also noticed the gums bleeding but had attributed it to a high INR since his levels have been high for three weeks). He is going to have a strong antibacterial mouth wash painted in his mouth after brushing (fun times).

We are using a dental school for this major tooth undertaking (don't worry a real dentist will be doing his work) because I felt it would be best to have the option of Evan's cardiologist being around and this place is the only one that works at the hospital Evan goes to. The school deals with a lot of lower educated folk that need the cheaper services of a dental school. What bothers me though is that they just assumed that I had no idea about basic dental care.

Yes, I know that Evan has several bad cavities. Yes, I know it may on the surface look like I was being a horrible mother since his mouth ended up so bad, but really I am not. No, he does not eat a lot of candy. No, I do not give him juice all day. No, I never gave him a bottle to take to bed. Yes, I know a healthy diet means fruits and veggies. Flossing is important, I know. It is just really hard if he is not very willing. Yes I brush his teeth myself, if I let him do it he would only chew on the brush a bit.

Another creepy thing was the real dentist talking with the student dentist right in front of me and telling the student dentist to go over brushing with me. I wanted to raise my hand and let her know that I was listening and understanding what she was saying right in front of me. It was not like I was speaking a different language and could not understand her (not that it would excuse that). i guess I know how little kids feel sometimes. I am just happy that once this is all over we can go back to our really nice pediatric dentist that is near home.

Laura's comment reminded me of something that I forgot to write about. Real dentist took the time to explain to little ol' me why were were putting him under general anesthesia. She explained that it would be very traumatic to him if they had tried to simply restrain him while they were working on his teeth. I was shocked with that one. Does she really think that I would have preferred the cheaper option of tyeing down my son letting him scream an cry for several house while they worked on him. How sadistic did she think I was? If they had not offered the option of knocking him out I would have insisted on it plain and simple. Maybe if he was a lot older I would have told him to buck up and inhale laughing gas (my first few fillings I had to have it since I was so anxious about the process too) but a three year old just does not have that kind of understanding.

Son of a gun

Thanks for all the birthday wishes! I wish I could say that my birthday was loads of fun but cranky kids and Evan testing high for his INR kind of took all the fun out of the day.

Last week Evan's levels were low and this week they were sky high but I think I may have found the reason for it so hopefully they will level out soon. Apparently garlic is yet another food that interacts with coumadin. The week before Evan tested low we had a run of heavily garlicked foods but have backed off lately which is probably why he is so high now. I am going to have to be more careful in the future with making sure that there is an even amount of garlic in the food we eat.

I wish that this was more widely known. My sister is the one that clued me in on this one. She has a new job working with older cancer patients who are often on blood thinners. That is how she learned about it and then passed it on to me. In all the things that I have read it has never even been mentioned before. I am almost afraid to feed him anymore as I can never seem to be sure which foods will mess with his delicate balance. This is almost as bad as having a diabetic in the house.

What now?

We are now over six months past Evan's last heart surgery. I find myself at loose ends. All of Evan's life there has been a surgery hanging over our heads, looming in the not so distant future. Now? There is nothing planned, nothing to plan for, we just wait. We wait to see if things change if, some how, despite expectations things get bad.

The number of doctor's visits are rapidly decreasing. This was Evan's last winter on Synagis. Next winter we will not have to visit the pediatrician monthly, in fact we may be able to go the entire year between well visits with out seeing him (stranger things have happened). Evan is only seeing his cardiologist as often as he is because he flat out refuses to let me use the equipment to monitor his pacemaker over the phone, so they have to do it in the office.

All of these wonderful things mean that suddenly Evan can start just being a kid now. The intrusions into his life are shrinking leaving only his physical therapy which to him is like having an adult come over to just play with him. I think I am going to have to come up with a new hobby or something.

It is check up time

Evan and Harry got to have a fun filled trip to the pediatrician's office today. Awesome Mom was bad and wrote down Harry's appointment on the wrong day on her calender so she missed it leading to a combined mega appointment. Evan had his three year check up/ Synagis shot (his last one ever, party time!).

Evan was not a happy camper for the majority of the appointment whipping a previously calm and happy Harry into a frenzy of crying. I should have know it would be bad when Evan would not even look at the pediatrician when he came into the office from rounding at the hospital across the street (I try and snag the first appointment of the morning). It was tough to do the developmental assessment on Evan since he pretty much refused to do anything for the doctor. I did get him to show off his mad light switch skilz while using his gimpy left hand which was quite impressive. Evan also surged ahead in the weight department gaining two whole pounds in a month. He is now 34 pounds.

Once I got Harry calmed down he preformed quite well in his developmental assessment. He did not gain a lot of weight but did shoot up in height. He is quite a shortie so more inches are great, it is really hard to walk with him and hold his hand even not all that tall Awesome Mom finds it hard to stoop over while walking.

After the appointment we went to a local park since it was quite sunny and nice. I figured that they should get to do something fun after getting shots. After nap time they were both quite cranky still and made it an early night. I will be so glad when Harry is done with his immunizations so visits to the pediatrician can be a bit less stressful, of course once they are done we will not be seeing him nearly as much (knock on wood).

A kind heart

I have been thinking on this idea for quite some time and now I think I can fully talk about it.

When Evan was first born and I was adjusting to my new reality having never even imagined that heart defects would be in my future I was not sure how to deal with the pity that I often saw in people's eyes when I told them about my son. Once I told them they suddenly started thinking that anything they might complain about was paltry in comparison to what I was dealing with.

It may be my personality but I never really understood that kind of feeling. I was lucky where so many parents were not. My child had gone through scary things but he was alive and had the expectation of having a very normal life should his repair surgeries go well.

A good friend of mine would often preface her comments when we were talking about the health issues of our children that they were nothing compared to what I had gone through. Yeah, her son had not endured an open heart surgery, but he had still been gravely ill. Her terror for her son's life was just as valid as mine and just because I had been through something worse did not mean that my heart was so drained of emotion that I would stop empathizing with other people just because they had not been through what I had. My own mother started saying things like that too until I told her to knock it off. I needed to hear all the boring every day stuff going on in her life so that even though I was stuck in the hospital with my son I could still feel connected to my family.

I am so incredibly lucky to have such a sweet loving little boy as a son who has stuck around so that I will be able to see him grow up more. Each day with him is a gift, but then each day is a gift even for people that are seemingly healthy and have no concrete expectation to die any time soon. Don't feel bad when someone tells you about bad things going on in their life if things are going good for you or even if they are not. An ear to listen and a kind heart are all that are needed to help when you are confronted with someone who has a child dealing with health issues, no pity is needed for them or you.

And now for something completely different. Here is a cute picture of Harry taken this afternoon. He had been breath holding and did his normal pass out routine but instead of getting right back up and whining some more he fell asleep right where he was. I had to keep Evan from waking him up while I was making lunch.

The Dentist

Yesterday we finally had the long awaited dental appointment that would get the ball rolling so that Evan could have his cavities taken care of. I was rather apprehensive especially after all the issues we had even getting the appointment. To top things off I was not even sure our dental insurance would even cover the visit. According to the website they have no providers in Big City which seemed really odd to me especially when they had a ton of providers in my small town area.

We got there and were checking in. Evan started whining which worried me even more but it turned out that Evan wanted out of the stroller to play with the mega lego blocks. We have them at home and they are quite popular with the boys. The student dentist we saw was nice and through. She had a bunch of pictures of different heart defects on a page and wanted me to pick out Evan's heart defect. I laughed and told her that Evan's heart was unique which is why I had put complex heart defect on the medical forms.

The exam went exactly the way I expected. Evan hated it when they were looking in his mouth but was otherwise quite well behaved. Having the cavities filled under general anesthesia was recommended due to his age. Proper diet and oral hygiene was stressed. They were eager to make sure that I scheduled an appointment with out dentist up here for Harry (which I had already discussed with the dentist). I could tell that they were used to seeing worse mouths with kids that had very poor oral hygiene.

After we bought some sandwiches and had a picnic in a local park. One of the advantages of this dental school is that it is right next door to the hospital that Evan goes to for all his heart stuff so we already were familiar with the area. It was quite tough to push the stroller filled with the kids up the steep hills. I guess I need to get in better shape. The day ended up being a long day but turned out much better than I had thought it would.