Diaper saga continues

So I have been dealing with problems getting dd1 diapers since she turned 3 in March.  Masshealth will pay for diapers once a child is 3, so I had been waiting for that moment.  The day after her birthday dd2 had a doctor's appt so I asked the doctor to write a script for diapers, which she did.
Unfortunately turns out that the doctor also has to write a letter of medical necessary to the insurance and then wait for insurance approval so the doctor's note alone was pretty useless to me. 

I returned at the end of March with both kids in toll for their checkups and told the doctor this.  The next day I spoke with the nurse who said she got everything all set and sent the script off to the pharmacy.  Then I waited.

I knew insurance approval took almost a month so I didn't expect to hear anything for a while.  5 weeks past and dd2 finally went back for her 2 month check up.  I asked the doctor what was going on with the diaper order since it had now been 2 months since dd1's 3rd birthday.  They said they sent it to a pharmacy called Denmark and gave me the number to call saying once they send it to the pharmacy it is out of their hands.

So I go home planning on calling in a few days, but decided to call that day.  Luckily I did, the lady on the phone said that they don't supply diapers and that was that.  Now I was really raging. I had been waiting for 5 weeks for insurance approval for diapers that never was.  I called back the doctor and told them this.  They then wanted me to call the insurance to see what pharmacy they deal with.  I am annoyed that I have to do all the leg work and wonder why they don't know what they are doing.  She clearly can't be the only kid in the practice on Masshealth and still in diapers.

The insurance told me that the doctor needs to contact medical management and that there was no record of a diaper order being sent to them.  I call back the doctors office again for the millionth time and had to continue to wait to speak with the particular nurse that I have been dealing with (for some reason it always ends up being the wrong nurse answering the phone and then it is back on hold I go).  By this point I am beyond pissed.  I tell the nurse all this and she asks for the insurance number.  The next day I get a call saying they sent the stuff to Allcare pharmacy.  The good news is this pharmacy has on their website all the steps in the process (wish I would have saw this 2 months ago) and does all the work of contacting the insurance, etc.  That was last Thursday.

Tuesday I get a call from the Allcare rep saying they got the doctor's stuff and am sending to the insurance for approval and it takes 14 business days.  I thought finally things are starting to happen and in a few weeks I should finally have diapers for dd1.

Well, today (2 days later) everything took a huge 180 degree turn when fedex showed up with 2 boxes addressed to dd1.  I thought to myself who sent something to dd1.  I open it up and it is 5 packs of diapers!  Only problem is it is size 5 and the script was for size 6 (which also are on the tight side so size 5 would definitely not work).  I think to myself, wow that is fast, they just got the order last week and sent it to the insurance 2 days ago.  Only thing that was confusing was the name on the package was from a totally different place that I had never heard of before.

So I call up Allcare to tell them about the wrong size.  They are shocked I got diapers all ready and said that it wasn't from them.  They also said that insurance wouldn't approve of 2 pharmacies sending her diapers so now I have an even bigger problem then just a wrong size to deal with.
So I call the number on the script which is in New Jersey.  The person who answers asks me where I am located.  I say MA, she then transferred me to another company (name unknown), who later tells me they don't know why I got transferred to them since they just handle Rhode Island.  Okay so now nobody knows what they are doing.  The women said she doesn't know why they sent out 5 packages, saying they usually only send out one the first time to make sure the fit is right.  She then said she will send out a size 6 and I should get it in 2-3 business days and will send a label for me to return the 5 size 5 packages (I was hoping she would say just keep them, but I guess not).

So there you have it, I should get a pack of diapers by early next week.  Of course, this still leaves the issue about the order from Allcare.  The diapers from this company is genetic brand, whereas Allcare said they send out name brand diapers.  Of course that involves stopping the order from this pharmacy and praying that insurance doesn't screw up which I don't really want to risk.  Seriously as long as the diapers work I don't care for name brand, though it would be nice to get for reward points though.  Also the other thing what I don't understand is that the insurance said they never didn't have any record of any order as of last week when I called them so I don't even know if the insurance is even aware or not.

past week update

A lot has been going on.  It is funny how I thought my life was so busy with dd1 when she was a baby, but now having two is a whole other story.

First dd1 - developed her first ear infection last Monday.  At first I thought she had just got something sticky in her hair, but when she got sent home from school the next day I realized that no, it wasn't anything she had put in her hair, but discharge coming out of her ear.  Unfortunately this has led to a constant battle with her and me constantly bugging doctors on how to treat her.  The nurse last Tuesday put her on ear drops.  I called Wednesday morning after trying twice to get the drops in her ear with no luck to change to an oral med.  They put her on Augmentum (horrible nasty stuff in liquid form as any vet would tell).  Ya, that didn't go well so when I saw the doctor on Thursday for dd2's appointment I had her switch it to amoxicillin.  I was hoping with it having a better taste dd1 would take it, but nope she spit it out just like the augmentum.  So I then looked up online and found I can put it stuff so I put it in her juice or milk and this worked for a few days (sometimes too well - she wanted 2nds after finishing the drink), but then again she refused to take the meds. 

Monday she returned to school, even though her ear was still draining, but she was physically fine.  She did get a cold from Thursday-Saturday which she managed to give to FIL and then me so I have been battling it this week.  On Tuesday the school called again about her ear discharge and said she had to be picked up.  Don't know why they didn't have a problem with it on Monday.  I figured I can't keep having this happen so I called the pedi office who said to call the ENT, so that afternoon FIL took her to the ENT.  An hour later he calls me and says the ENT says she has to see the pedi and I need to give the pedi authorization for him to take her, which I did since I was too sick to get out of bed yesterday.  They finally came home 90 minutes later, saying she got 2 shots in her legs to cover her dose for the next 24 hours and to try putting the amoxicillin in chocolate frosting tomorrow night.

I was praying this was the end of this, but then this morning a cop shows up at the door. FIL had taken dd1 out to the library and park and I thought something had happened to her when she starts questioning me if I have a 3 year old girl.  She then says DCFS called her and I ask if it has to do about her ear and she said yes.  I then tried to explain to her about how it is being treated and she has seen so far 3 medical professionals about it in the past week.  At that moment FIL and dd1 come home and dd1 is covered in chocolate all over her mouth and pants.  I about died.  The cop then asked to look at her ear, which hadn't been cleaned recently since I have been sick so it still had the died bloody discharge.  I then try to explain how this is normal with ear tubes when there is an infection.  So then asked for my number to give to cps so guess who is likely going to get a call from them to come check up on us again.  I feel September is repeating itself.

Now on with dd2.  My May has basically been now filled up with appointments for her.  She was suppose to have a renal u/s tomorrow, but the hospital just called me this morning to say I need prior authorization first since it is out of network in Rhode Island.  I am really starting to hate Network Health. We can't see the geneticist anymore since the insurance has refused to grant any more follow ups.  Luckily dd1 geneticist is in MA so it was easy to fix that problem, though left the doctor feeling horrible about the situation.  But because of this I am reluctant to go to RI anymore for any treatment .   So now her u/s is moved to the 23rd since we need time to get the authorization.

Then on Monday she goes back to the Cardiologist.  I am  curious how her heart looks now.  She is eating much better - up to 4oz every 3-4 hours and is no longer doing that horrible heart failure cough. 

Developmentally though I am concerned about her.  She is still very much like a newborn - not meeting any milestones yet and just eats and sleeps all the time.  EI is coming next Thursday to finish the 2nd half of her intake and then they will do a service plan and schedule. 

The following Monday we have to take her up to Waltham for her cranial facial eval.  I am surprised we got an appointment so quick - they actually had an opening for this Monday, but we can't because of the cardiologist appointment.  I hate how we have to travel so far, but can't risk calling Hasbro and dealing with these insurance issues anymore, so Boston it is.  Good news is is it is the chief of surgery who we will be seeing so the doctor seems to one of the big shots so hopefully we can get some definite answers of what is wrong with her and what to do about it.  It is probably a good thing because you know what your stuff you would think there is nothing wrong with her face, but us family members know that there is something there that isn't right.  I know it is nothing urgent, but would like it corrected by the time she starts school fulltime.

Genetic appointment

Yesterday the baby had her genetic appointment and we got the results of her microassay that was taken right after she was born.  She had a 50% of getting either of our bad chromosomes, 25% of getting both, and 25% of getting neither.  Unfortunately she fell into the 25% chance of inheriting both. They still have my duplication as listed as unknown significance (probably because I - and now dd2 - may be the only people with it) so the doctor doesn't think it is important, but dh's chromosome 6 deletion is now listed as pathological known to cause development delay and other health problems.  Of course neither dh nor his mother like to believe this despite me showing them the literature.  She thinks since there isn't a nice sounding "syndrome" name like our nephew has then it means nothing.  That upsets me because it basically makes like all the therapy I have been getting for dd1 and dd2 medical problems seem like nothing.  I understand that she doesn't want to admit that there is a problem from her side of the family, but the fact is there is and denying that the deletion doesn't cause problems doesn't help anything.  I mean the baby isn't even 10 weeks old yet and has already went through one surgery with likely many more to follow.  She is also already developmentally delayed, though I don't know if it is related to the heart failure or the deletion.  Anyways I am not taking any chances and have left a message with EI to make an appointment to get her evaluated.  The genetisit also wants her to have a renal u/s since enlarged kidneys is common with the deletion.  DD1 had that problem, though it was picked up at the anatomy scan.  I think back to the anatomy scan I had with this pregnancy and all I recall is the doctor's words that she is perfect, there is nothing wrong.  I can't believe that just 6 months later my baby was in CHF and undergoing cardiac surgery.

Day after surgery

We were lucky to avoid the ICU and be sent straight to the floor and I found out the ICU nurse who gave the tour was wrong. You can use cellphones in the room, just not use it to make calls. So I was relieved since I brought no other firm of entertainment. I did break the no cell call rule though by accident once because I forgot and luckily because I need to catch dh quickly. He had just left when I remembered we didn't take the bottle stuff out if the car.

The only bad thing is that the rooms are shared. When we first got in the room there was no one else so I was hoping it would stay that way, but unfortunately a few hours later I say that a name got placed on the door and by evening another baby got put in here. Of course the whole family was there when it arrived and the mother doesn't even speak English. I guess that is both good and bad. I won't be talking to her and I can talk about her and she won't know. I couldn't wait until 8pm when visiting hours ended so the rest of them would leave. However it just got worse at night. The pull out chair they make people sleep on is horrible (seriously I think the tile floor would have been better), but the worst was the freaking baby beside us that wouldn't stop crying and babbling. It is one thing listening to your baby, but another persons. I was lucky I was dead tired from not sleeping for 2 nights or else I wouldn't get a wink of sleep. I am lucky Chloe is a quiet baby. I would die if I had that kid for a child. And she wasn't even young like Chloe is, but 7 months old. By that age a baby should be sleeping through the night but no it was crying at 12, 3, 5 in the morning and maybe even more but I was to tired to notice.

Surgery day

Yesterday we had a full day of tests done for surgery. They said it would take 6-8 hrs but we were done after 5, which was good because I was dead tired after dd1 stayed up all night and caused me not to get any sleep.

Unfortunately I couldn't get much sleep last night because we had to be here by 6.
They took her to the OR at 7:30 so now we just wait.

It has only been 10 minutes so far and I seriously want to kill the family sitting beside me. Here I am worried my baby will die and this family is not only acting like this is a social get together I also have to listen to the grandma talk in baby talk language showing pics and saying how cute so and so is. At first I thought they were talking about their pet and I was wondering why they would be going on and on about their pet. Then the young mother goes on and on about a baby Einstein toy this kid liked that was in the waiting room and then the grandma went on (in her baby talk language) of how she had to get this kid this toy and where to buy it and oh look it is at bed bath and beyond oh good so then I can use the 20% off coupon and then when she found out it was only $10 then she complained because it was too cheap. Seriously this conversation went on for 15 minutes if them repeating these same things over and over again. I can understand maybe their kid was going for some minor surgery but many of the families here likely aren't

We have a date

DD2 is having her surgery this Thursday for her PDA.  We have to be up in Boston for 7:30am the day before for an intensive 6-8 hours of testing.  That means getting on the road at 5, and since they are going to sedate her that morning for the echo I have to be up and feed her at 3 - since she can't eat after 3:30am.  Can you say I will be tired that day!  Since I refuse to go home that afternoon during rushhour only to return the next morning we have decided to stay in town that night.  Not sure yet if it will be at dh's uncle's place or a hotel.  Then Thursday-Saturday I will stay with her in the ICU.

I am looking forward to her finally getting fixed.  Everyday she just gets worse.  A couple of weeks ago she started coughing badly despite being on the lasix and now in the past 2 days she has been feeding really poorly - only drinking like 2oz at a time instead of her normal 3.  Yesterday was her 2 month birthday so it really concerns me how small she is.  She likely went from being 30% on the chart at birth to now not even being on the chart. 

It is hard to realize that all I wanted was for her to be born so she would be safe and it was this act of being born that caused her to go into heart failure :(

Cardiology appt #2 (7 weeks old)

Todays appt was pretty low key.  She gained 1/2 lb from 2 weeks ago and didn't grow any length so not sure how effective the added calories is.  She now has a cough, but the doctor didn't seem too concerned.  She is already getting the proper dose of lasix and with the slow growth the doctor doesn't think she will outgrow it anytime soon. 

Still haven't heard from Boston about when she can have surgery.  The doctor said he has been hoarding them everyday, but that the stuff has been sitting in the mail room for the last number of days and no one has transported it from the basement to the cardiology department on the 7th floor.

He made another followup in a month's time, but hopefully she will be going to Boston before that.  He said he originally wanted her to be done in April, and well who knows if that will happen now that April is half over.

We were also warned about keeping her out of public since if she ever got sick it could be very bad since she already breathes fast as is.  So looks like it will be a long time before we can go back to church or other public places.