Time sure does fly

It's been a little while since I blogged. My poor blog seems to be ignored when things get a little busy.

Our trip to Cleveland was worth all the the energy spent getting greg's O2 approved and set up. To be honest it was one of the more informative and useful appts that we have had. As we knew both boys have dysautonomia caused by mito and we are now treating it with meds and added salt. They both are also thought to have small fiber neuropathy. 

We have a better understanding of Zach's urinary problems and will be doing an MRI to confirm that he doesn't have a tethered cord just to check it off the list. While we are sure that is not the problem we need ot just confirm that. The dr felt that the urinary issues are neurogenic in nature and have been caused from all the autonomic crises he has had. Zach is now to have regular ultrasounds of his bladder to confirm that he is still emptying and that it is not overly large. They also gave us an optional med that our ped or cardiologist can use to treat his low heart rates. While his autonomic tilt table was normal given his history and documentation from various drs he was found to have dysautonomia.

Greg was our little one that we expected to have a normal tilt table and it was anything but. It was so grossly abnormal that they called in another specialist to look over the results.  He was given an official  dysautonomia diagnosed by the tilt table, history and documentation. The tilt table showed us that the cyanotic episodes he is having are not autonomic in nature.  They observed him turning blue during their testing and were able to document it (yay! not the turning blue part but the documentation). During the test Greg was sleeping and like at home they were able to witness and see first hand via the machines for the test that he is having weird respiratory and heart rate jumps. He was asleep and they watched his resp rate go from 15 to 50 and his heart rate go from 75 to 160 in seconds. They were not able to recreate the occurrences by waking him or with pain. But were able to document 2 events during the test. They have referred him to a very specialized Cardiologist at Duke. We have an appt with them on 16 Dec. They are hoping that the the increase in COq10 and the l-carnatine along with the clonidine will help him with some of the leg pain he is currently having. They also felt that we need to look at placing a GJ vs the G that he currently has to help with the reflux and maybe some of the stomach discomfort that he is having.

Greg is once again experiencing a a developmental regression in gross motor and in feeding. While he eats very little by mouth anymore he is having a hard time with what little he does take in.

We also received our swab results back showing myself and both boys abnormal. We will be seeing  Dr. K next week to see what to make of it all and where we go from here.

Other then that we have been busy with school field trips and just day to day life. We are trying to make it out to all the tourist type sites while the weather is cool enough for us to get our and about. We have currently under 6 months till our move. We are looking at houses online and trying to get a good feel for what we want and where. We will be starting the pre-move purge of crap in the next few weeks and everything in the attic will come down and be stored in the garage till the move. We have found a good home for one of our cats who we don't think will make the move sell and I am not willing to sedate him for almost 10 days and we drive cross country.

We got a small Charlie brown Christmas tree this year because we are a little short on space. I like it and figure as long has we have a tree who cares how big it is. It just means less mess for me too clean up after. I started making quilts for the boys beds but am a little under the weather so that has stalled for now. For the most part I have finished my shopping and just have a few family members left to get some small things for and drop it all off to be mailed.

Getting ready

It's been a crazy few weeks.

We have been getting ready for our trip to Cleveland. I think we finally have everything worked out. Flights, O2, hotels, car rental and now it's on to packing. I'm trying to figure out how to pack everything into 1 bag so that we only have to pay for one. We are only going to be gone for 4 days, but you don't realize how much you really are going to need till you start packing it. All I have to say is geesh. Zach's excited about the plane ride now. Hopefully he feels the same way during the trip. It will be a long day as we have a 4 hour lay over in Dallas. Due to the way that appts lined up we will not be able to visit any of the attractions (zoo, museum or hands on play area).It's going to be a fast and busy few days. We arrive Tuesday evening, Testing most the day on Wed, appt w/ specialists on Thursday and then fly home on Friday. I'm tried just thinking about it.

We found out this week that we will be PCSing (change of duty assignment) this Spring. My hubby will be leaving here to go to school in Alabama in March, but the boys and I will stay until May when we is due to report to his new assignment. As there is not any appropriate medical in the area for the boys. We will be headed to Washington in May. We are very excited as the weather is much better there and medical care is much closer and better in the area then were we currently are. We are planing some sight seeing trips along the way. Mount Rushmore, Yellow Stone and a few other stops.

On the medical front Greg as cardiology and there were no changes in the last 2 months in his ECHO which is great. We will continue to follow up with cardio every 3 months with repeat ECHOs. Zach has been fairly stable. We have had some heart rate issues with him. Both boys had been sick and his never came back up to baseline. His new baseline heart rate while sleeping is in the 40's. Cardiology is not able to tell us why he went from the 60's with a few 50's here and there to the 40's. We are hoping that the Autonomic specialist in Cleveland might be able to give us that answer. Greg is doing great on the feeding pump and gaining weight. So much so that he is only a few pounds shy of his big brother. We are sad that he is still not eating orally but he is gaining and growing on the pump so we do what we have too.

We also won our appeal for Zach's nursing care. They have authorized for him to have night nursing 5 days a week. Thanks to my husbands chain of command and our ped for writing letters to help us with our fight. We are now waiting for the decision on Greg's nursing care. 

Petting the rescued turtle.

Riding the buckets

Zach loved it!

Greg was terrified.

Zach and daddy climbing the tree.

Since the weather is has cooled down some we are taking advantage of it. I have been teaching the boys the fine art of fishing and crabbing. Zach spend most his time playing in the dirt just like a boy. And Greg spends his time copying his big brother and pretending to fish. I let them take turns pulling the fish in and they both get super excited. I love it. We decided today was a nice day to hit the pumpkin patch. When we got there they were having a fall festival. The boys loved it. They got to climb around a fire truck, helicopter, take a bucket ride, climb a tree and of course pick pumpkins. Zach took so long daddy finally just picked a pumpkin for him. Zach kept telling daddy that the each pumpkin was to big, to small, to rolly or to dirty. LOL! We all enjoyed getting out. Hoping to hit the nature centers hike and treat next weekend. 

It's been awhile

I guess I've been hesitant in blogging since things have been kinda crappy. You know that saying," if you don't have anything nice to say don't say anything at all".....well I haven't had very many nice things to say so I've been keeping quiet.

Were to start....as of Aug 2nd our nursing care was cut. We are working on our appeal. But it's a lengthy process given we are having to take the issue up my husbands chain of command. The reasons that they denied care were not accurate. They made it out that our ped said zach was healthy with no issues and he didn't need any care, which he said was untrue. He felt so strongly about it that he wrote a letter to go with our appeal. He said that it was one of those black or white things with the questions they asked him and he felt like it was unfair. One of his examples was

Medical reviewer: Does the child have epilepsy?
Ped: No, but he does have seizures that have been witnessed by many.
Medical reviewer: Has he had a seizure in front of you?
Ped: No, but he has had multiple observable seizures.
Medical reviewer: So he's not had any infront of you and he does not have epilepsy. So then he does not have seizures under our criteria.

Let's just say the whole line of questioning of the ped by the insurance medical reviewer went that way. One of the other things that they denied us on was that I am trained to do his bolus feeds. Which is true but that means that I have to get up and bolus my child every 3 hours day and night, and also monitor his alarms at night and care for him during the day to. It's such BS.

So our ped then filed with our insurance for nursing care for Greg. Well as we assumed that got denied to. Stating that he was no qualified/enrolled in the program that he is already in. So we are appealing that too. Greg requires monitoring at night and during naps. Not only that but he is bolus feed every 2 hours.

Needless to say at the moment I am hating our insurance. I know that if I wasn't able to care for my boys the way that I am that I would get nursing care for them. And you know what sucks is that I'm paying for being a good mom. Me and my kids don't deserve any less then someone else who chooses not to learn to care for their child or doesn't care enough to. 

Then the following week Greg was seen by Pulmonlogy and is now on O2 as needed.  We did a 24 hour pulse ox study that showed he was at 90% or above about 90% of the day which is good but there is still that 10%. Plus our pulm specialist wants him above 92%, so I'm not really sure how much of the day he was above that. After receiving the study results they also requested a sleep study be done.

It's been a bit a struggle for me to figure out the easiest way if there is one to get a child out and about who is almost 2 and wants to be down and running with an O2 tanks and his feeding pump. Let's just say that we are getting there but we've had a few bad tube pulls and a few oops he pulled his g-tube out. He hates putting the O2 cannula on and screams bloody murder every time. You have to pin him down to get it on him. But once it's on he's fine with it. Until you turn the O2 on and I guess he hates the sensation because it's another 10 to 15 minute melt down until he gets use to it. I honestly didn't think he would need to O2 that much but we have used it way more then I thought we would. The order is for any time he is 92% or lower or any time his lips & tongue are blue. Some days he runs on it alot more then others.

We did get Zach's medicaid waiver proved finally but it's really of no help to us at this time. 6 months ago before all the goverment cuts Zach would have qualified for nursing/sn daycare but now the only thing they are going to cover is co-pays. Which really is no assistance to us given all but the ped is out of state. We applied for Greg to get on the waiver but are still waiting. We've heard nothing. I've made muitliple calls but nothing. If I hear nothing by the end of this week I plan on camping out at the medicaid office till someone gives me some type of answer.

I don't want any one to miss understand. I feel fortunate that my kids are as healthy as they are I know that there are other kids that are in much worse condition then my kiddos. I am thankful for what we do have. With that said I'm tired. I'm caring for 2 little boys who are so normal in so many ways but have so many needs compared to most other kids their age. I am burning the candle at both ends  caring for them day and night. I'm lucky to sleep more then 3 or 4 hours a day.

Zach started school two weeks ago. Other then a bus mess things seem to be fairly smooth. He is attending class from 9 till 1215 Monday - Friday. It's been a matter of just getting into a routine and changing all of our st/pt/ot appts to fit around his school schedule so that I don't have to take him out.

Right now Zach is sick so with a cold. # weeks into school and we had our first day out today. I couldn't even get him out of bed for school this morning. My kiddo who is up by 615 didn't even begin wiggling around till after about 830. I tried waking him for school but couldn't get him to do more then just roll over. Poor guy. He does seem to be feeling a little better today. He is lower energy and didn't do much but stand around and watch tv all day. Greg has a terrible case of the grumps today so I'm gonna assume that the cold zach currently has is going to take greg down next.

This week is a quieter week with just our normal pt/ot/st appts. Hoping to catch up on a little house work and maybe steal a nap if I can get greg to go down for a nap before Zach's bus gets home from school at 1230.

Next week will be a little busier as Greg has his sleep study and his follow up cardiology appt. We are hoping that we don't see any more changes on his ECHO.

Even with all the craziness we did take 2 days to go up to Charleston SC. We visited the Aquarium which the boys loved. Then we took a ferry over to see Fort Sumter. The boys had a ball.

Making headway

Well over all things have settled down. We got a 30 day extension for nursing care and are jumping through hoops to try and keep it. We fired our old agency and as of the 5th of July we will have a new agency.Our insurance is requesting tons of zach's records from the specilaist. Which we are having a hard time getting as we are told that at this point some of them don't exist yet.

Greg's Halter came back totally normal (as did zach's many times). We are doing the 30 day even monitor now. He has had multiple episodes while on the monitor but nothing is showing abnormal. So guessing it's not going to be a cardio issue. He has decided over the last 4 weeks that he no longer wants to eat enough orally. He'll take a few bites of something but then leave all the rest behind. It's a huge change. This is my kid who eats anything and everything. GI said that we can stay home through the weekend as long as he is getting enough formula to keep him hydrated and get some calories in him. We see GI on Wed. The plan is to X-ray him to make sure he hasn't swallowed something (which we all doubt since he's not in pain and will eat some), then if the x-ray shows nothing they are talking about another scope. We know form his brocoscope that he has current damage and inflammation from reflux, plus there is concern that his blown nissen might not be totally blown like thought maybe part of the issue. He is also talking about another nissen. I don't know we will see. I hate that for him. I think that if that is what they are looking at I want to try a GJ with him first. We know that his last nissen blew due to motility issues and if they re-do it again they would do a pyloroplasty to but Zach had that done and now has issues with dumping. I think it might be worth trying a GJ.

As for Zach we have identified why he is having all the potty accidents. After an ultrasound this week we know that he has thickening of the bladder walls. We do know that at this point it isn't caused by infection. The Ped thinks it is linked to his autonomic nervous system. They have put a referral into Urology and we are hoping to have an appt in a few weeks. We are still struggling with the gas. It's not as bad as it was but still there along with the distention.

Daddy will be home for the weekend and Zach is excited. He and daddy are going to see CARS 2.

Stress, Stress and more Stress

Well it sure has been one heck of a rough week. It seems like one thing after another. First there was Greg's cardio appt that was more then we expected. Then the letter from Medicaid for Greg and calls made and no one knows where Zach's is at or who has it. Then our insurance called to tell me that as of the 1st of July Zach will not get nursing care. Then I fight our insurance to get the boys supplements covered as they cover others that need the same ones, but NO because our care isn't on base (for real).
Then I get home to paperwork from Medicaid saying that I only turned the front page of the app in....not all 60 pages that I hand delivered. Zach's behavior has been horrific. I am still waiting for our Peds office ot give me the correct need documentation for Zach for school. Not to mention the marathon of appts as usual. The stress has bad this week. I think it's affecting me more because the boys have either been alarming at night or just are not sleeping well, so I'm running on nothing. Of course all this has to happen while Pete is gone for 6 weeks again.

As for Medicaid. I think I have most of the zillion other pieces of paperwork they require, but don't tell you prior to submitting the application. And depending on who your case manager is the paperwork is different. Most of it I already have but they only give you 10 days from the date on the letter they send you to have received it back.  I call to get clarification which is pointless. They never seem to be able to tell you what they are asking for or who is handling what. While I have them on the phone I ask about Zach's application since they were both submitted together and the worker tells me his is pending. Pending??? What does that mean. She tells me it's been pending since last year. Ummm. No that one was denied thanks to the IEP teacher who didn't sign her credentials. So I ask who has the new application I submitted with Greg's and they can't tell me. REALLY....they have no idea where it is and that was from the supervisor.

Then there was the whole we are cutting your nursing care. Which just about sent me over the edge given we went through this 80 days ago. Let's just say that it has turned into a complicated situation as part of it is due to lack of documentation by the nurses in our home but most of it is due to the crappy job that the companies supervisor isn't doing her job and didn't catch it. The super is not reading any of the incoming notes, she isn't making her home visits and she is not correcting Meds sheets along with multiple other issues. So our ins case manager calls her for clarification and so on and she is not able to answer their questions well no kidding as she has no idea what is going on in our home.

Then there is the supplements that the boys need. Can you believe that because we choose to use the PPO selection on our in they will not cover them. And they do not pay for us to travel to any appts. Did I mention that they are unable to meet the boys needs on base and that is part of the reason that we choose to use the PPO. So we get screwed and not only do I have to pay out of pocket on the PPO plan but I walso have to pay for everything else. So I paid for them all and now have to pay for them to be compounded too. I can't complain to much as I know our ins covers much better then most companies but it still hurts the pocket book.

While in dealing with our patient advocate over all this some A$$ hits the front end of my van and tells our nurse who was in the car that it was my fault because the front end is on the line. Luckily there was no damage but really!!!

We finished Greg's 24 hr halter and fedexed it off on Thursday morning. We started the 30 day event monitor that same afternoon. Oh the fun....not. Actually he is doing good about not pulling it off, but the darn box won't stay clipped on to anything. We have used it many times already as he has turned blue on us that many times. I call in the report 2 x's yesterday only to have the staff at the center treat me like a loser mom because my kid is turning blue and I am only pushing a button. DO oyu really think I'm that dumb. One of them even called me back to as she said, "give me a reality check". Hello it's my reality and I understand way better then you do. Maybe you should be asking why he is on it before jumping to conclusions.

And then there is the re-written letter from the Peds office, I've been waiting on for 2 weeks. Which was needed for the school and they messed up. To bad I needed it before school ended and now it's over and due to the error I was unable to get it turned in. It makes me upset that I was the one who caught all the errors and now my kids ability to go to school might have been shoot down because they can't do their job.

Finally there is Zach I'm not even sure what is up with him. I don't know if it's the age, the wean in a med or daddy being gone but OMG. He is temperamental, he is mean, he is out of control and his sensory issues are driving me nuts. He wants to be in your face every minute. He even charges you to get in your face. It's been bad. I can't figure out what the issues is.

I'm in that burn out phase. I know it will get better but there really is no one to give me a break and it seems like the knocks keep coming. It seems like no one know how to do their job and I have to make 50 calls to get one thing done or I have to ride that person's a$$. Now I'm a fairly patient person but lazy people who don't give a rats a$$ about their job need to let someone who cares and needs a job have their.

Well that's it for now I better stop while I'm ahead. I'm not a hateful person but right now I'm pretty frustrated with the world.

Cardiology appt not what we expected

We meet with Cardiology today to see if they were able to find a reason for Greg turning blue. Well they can't give us a reason. They are doing further testing to see if it's arrhythmia issue. So it's a 24 hour halter. Followed by a 30 days event monitor. Oh the joy. Hoping it will give us answers. They did think that he needs to see Pulmonolgy but  want GI to make that call.

What we did find out today is that there are visible and measurable changes to his echo. His PFO is still the same and very small. But he is showing signs of an enlarged left Ventricle. We are now to follow up with them every three months for ECHO and EKGs. They said it is something that they see in Mito kids. 

Offical VEEG results

Neuro.


Seizure like movements. Lt sided jerking. Noted in video on night 1.
Dilated pupils.
Multiple episodes of Bradycardia noted after seizure movements and other times.

They are saying he is having seizures, but they are not electrical. They are organic caused by the stress on the heart. Neuro says the Cardio needs to address it. Keppr wean started. Now it's a wait and see if it was helping or not. No need to f/u with Neuro unless things change (crazy people), but to keep them up to date on everything. So there is no doubt that it is seizures. But they will not give a PRN med for emergencies based off the wacky way that his body works it would be to dangerous. Now to get Cardio to call us back. I've been trying 2 weeks to get them to call us back. I think I upset the PA when I told her that her answer wasn't good enough and I was tired of people passing the buck because they didn't know. Ok. Might have been kinda of a mean thing to say but it was how I was feeling. So on Wednesday when we take Greg to see Cardio (different dr) I will be hunting them down to get better answers.