Tuesday, July 20, 2010

At the End of the Day... Thankful

It's amazing how from the second you realize your eyes are actually open and it's a new day, the balls can already be coming at you at full speed and if you don't duck... well lets just say, You Better Duck! This is the kind of day it was here today. One thing being thrown at you after the next and you don't even have time to sit down and rationalize what just happened since it is yet again time to duck. You know I think that might be a blessing in disguise though. If you actually had to stop and think about each thing you probably wouldn't make it to the end of the day.

Somehow though at the end of the day (the very end...) there is peace, it is all ok. To know that there really are good and caring people in the world is what makes us continue on. Some days it feels hopeless, you don't know how you will make it through, but yet you ALWAYS do. For that I'm thankful....

I guess what I'm alluding to is all the drama that you deal with when having chronically ill children and leading the life we do. And the thing is it's not even the medical problems it's all the other daily drama you still have to face, only it's usually 10x worse because of your situation. But yet it's then even harder to deal with. This probably makes no sense and people who don't live in Holland probably don't understand, but it is what it is....

This day is just one example of why I feel my life is a blessing not a curse. At the end of our day, you are so tired. Even though today was a bad day, you have no fight left, but yet somehow in the end it there is peace. How is that possible??? I guess because to me, and my family, the things that used to be important just aren't anymore. All that matters is that we have each other, that we will remain strong, that we will continue to fight the fight even when everyone else deems it hopeless we will show them we are strong! We are not like every other family! We will win our fight and never let anyone tell us otherwise! I am thankful for everyone who has told us what we do is impossible because it makes us fight that much harder. To everyone who tells us we can't, watch out!

I am also so grateful for our amazingly relentless support for our community agencies without them we could not do this! So THANK YOU from the bottom of our hearts to CARES, Yellow Umbrella, & Life Paths. Without you we would not be the family we are today. We will finish the fight and not only win but better for it in the end!

Friday, July 16, 2010

Patience is a Virtue

Or so my mom would always tell me as a child. I wasn't patient then and I'm not much better now, lol. It's all over and now we wait...

Well we made it home thanks to all the wonderful people at Children's Flight of Hope! Our flight was wonderful and I have to say I have dealt with more agencies, charities, and organizations than I can begin to count since having Riley and I have never met a nicer group of people! They all went out of there way to help us and made sure every detail was taken care of so that I didn't have to stress over it. I think this is the first time I have ever traveled and not been completely exhausted just from dealing with all the hastles of the airports. Its just really not a place for Riley to be anyway... These pilots go out of there way to give there "free time" to give us this gift, and we truly appreciate it. Without them and many others we never would have been able to get Riley the care we are hoping and praying will save her life. Thank you to everyone out there who gives back...

She was able to complete her mystery testing today which we now know was a heart rate variability test. It's basically where they place a special monitor on you(3 lead), blood pressure cuff, and what looks like the equivalent of a weird pulse ox probe and you stay hooked up for five minutes meanwhile it's all going into a computer with a very special program that records specific things about your parasympathetic and sympathetic nervous system that will later be analyzed by the special "guy" who does the testing. Sounds easy right??? Well you try keeping a 16mo old wild girl still for 5min, and I mean almost completely... Especially a girl who is fascinated with any and all that is medical and we basically gave her new toys to play with. Let me just say we did it, even though it took all morning and we were finished 10min before we had to be down stairs to meet our ride to the airport. Thankfully "the guy" was extremely understanding and very willing to work around our issues and be accommodating. He said he will be spending all day today and tomorrow analyzing everything and will make sure Dr. Fortunato has the numbers on Monday. The neat thing about this test is they have never done it on a child Riley's age as I said yesterday. Come to find out the next to youngest they did was a 4 year old. So, the only bad thing is they have no real reference ranges per se since the normal ranges are based on what an 8 year old would be. It certainly seems like they are trying to establish this testing and I could easily see it becoming a huge thing! It reminds me of an EEG in a way, since it's like I told "the guy" I wish we would have had more time because we could have easily induced her autonomic issues by sleep deprivation and then they could have really gotten some good results. There's always next time...

Unfortunately, I was kind of disappointed we didn't see Dr. Fortunato again before we left. We didn't really see anyone after the test was taken off yesterday. I guess he will be getting with her GI Dr.'s in Orlando to come up with a plan. Which brings me to another infuriating issue... I called to make Riley an appt. with GI for when we get home to discuss some of the issue's we've been having and the trip since she hasn't seen them since May and she's supposed to be seen every 2wks. Come to find out her GI, D. Mehta is gone until Aug. 20, ok I did know that. But, our back up guy who is the ONLY other person I trust the management of her GI issues to is gone too! He wont be back until after July 29... WTH is that! How can they seriously both be out for so long... They said they could go ask if someone else would see her if she needed to be seen sooner but that is pointless to me since I don't want anyone else besides them managing her. So, I guess I'll deal with that issue on Monday. Oh yes and her pediatrician will be out again next week too. I really wish these dr.'s would get how important they are to us and that they can't just up and take off on us. Ohhh well, I'll deal with that on Monday.

We went and got Liam as soon as we got home. He was so happy to see us and we missed him so much. Thank you Denise!!! I love you for loving my wild man so much! He had a great week and was spoiled rotten as always by everyone there. So, now the easy part is over (HaHa) and now we just patiently wait, Or impatiently depending on how you look at it. We have a busy week but hopefully the weekend will be somewhat quiet even though we don't have a nurse due to circumstances beyond her control. Ohh, and that's another fun issues to deal with Monday the fact that they are wanting to drop ALL our nursing hours at the end of the month. I haven't even decided if it's worth fighting over yet or not.... Some times you just get tired of fighting. But I'm just going to enjoy my restful day tomorrow with my cute and wild children and try to be thankful for every single wonderful day I have with them!!!

At the Airport

Waiting to take off... Not sure what's up yet

Being Silly!

We're Home!!!

Thank You to Our Wonderful Pilots Drew & John!

Thursday, July 15, 2010

Same Story, Different View.....

I started to write this out last night but then Riley decided to keep me busy until all hours of the night.... I'll get to that in a minute though. First off, We made it to NC!!!!!! Thanks to everyone who worked so hard with us to make this trip a reality. We couldn't have done it without you!

Our flight up was great. Children's Flight of Hope has been wonderful to us and we were able to quickly and easily get up here with no hassle what so ever. Let me tell you, small planes definitely aren't as bad as everyone makes them out to be. Having all the leg room you want and not being squeezed between two fat people is the best! What's priceless though is not having to drag our entire hospital and pharmacy we carry everywhere with us through security! I'm sure you can imagine how fun that is. I got to take anything I wanted and no special packing.Woo Hoo It's the little things in life that make me happy now a days.

The hotel we stayed in the first night was nice and Riley enjoyed roaming around somewhere new. The next day it was off to our business bright and early. We met Dr. Fortunato at his office for our initial appt. at 9am. He was everything we expected and more. He was very nice and patient and had a wonderful bedside manner. He listened to everything and had some good ideas. We then went to have all her Momometry testing started. They took her to the OR to do an endoscopy with biopsies and place the probe for the mamometry. Since she has a stoma they were able to use that to put the probe thru they also placed a small foley catheter beside it to use as a G-tube. Riley did great although he had some difficulty getting it to stay down straight. He laughed about it being his OCD, and something about sending it off (the probe) to have it fixed if it wasn't better next time. Little did he know.... LOL

The only problem we encountered was that the probe was not secured in place by anything except the tape we had used. Due to a lot of pressure in her belly she kept leaking out around the stoma and popping the cap out of the end of the foley. The machine was next to the bed and hooked to the probe that was inserted in her belly. It reminded me of a EEG machine. It had like 6 different lines with wave forms on them. About an hour being hooked up her dressing was soaked and fell off before we noticed the probe managed to slip out some.Not to bad though. Around midnight it happened again but only worse. It seemed to slip out quite a bit this time.So, Dr. F got woke up at midnight..... That's when we got the whole, "I've never had this happen before...." thing. The other weird part was the stuff pouring out of her stomach was really gross, unlike anything we had seen before. Everyone seemed to agree that it really looked like poop, although we don't actually know what it was. It was thick and brown though. So, he had the resident push it back in and we hooked her g-tube up to drain. This helped to reduce all the pressure she had and we were able to keep the probe in for the rest of the study although it wasn't exactly in the right place but, we do think we have enough data to make this all worth while. We were also able to give her the meds to stimulate the gi tract and watch it and we got to feed her some at the very end and it captured everything.

Bottom line is.... We wont know anything officially until he reads the entire study since they do a lot of editing and that type of thing. Anytime she was moving it would jumble the test but they have ways to pick out the important pieces of info. Just from the prelimenary glance he took he was happy since he saw some movement in her stomach so AT LEAST it's work in some fashion. The problem is we think it's just not working together properly and this is what we are hoping to determine from this test, and why we came. Just from what he has seen so far, the history he has read on her, and what we have told him he did say, he is definitely AGAINST THE SURGERY! Omg, just hearing him say this made this entire trip worth coming for! It confirmed everything Wil and I knew was right and her GI at home too for that matter. Everything happens for a reason! If Riley wouldn't have gotten that horrible staph infection in May she would have had surgery two days after. Not to mention she also had the huge blood clot in her heart and I'm sure we can all imagine how bad that could have been. He confirmed though, he thinks her pylorus is just very dysfunctional, she has muscle/nerve issues and in his experience the more you cut the more you further damage the muscles and nerves. Not to mention the chances of making her dumping issues worse are quite significant and outweigh any possible benefits.

He DOES feel she should have a separate J-tube and we need to pursue J-feeds again as he feels this is her only hope of getting off TPN. The problem there in lies what are we going to feed her! I explained this was one of the biggest problems, she has never tolerated any of the 20+ formula's we have tried. So, ultimately this will be for him and Dr. Mehta to hash out. He will get all his testing results together and then track down Dr. M and together they will come up with our plan for managing her. I can not imagine any two doctors I would ever trust more than them handling her most precious issues though! I am very happy with our new "team" !!!

She is scheduled to have her last test tomorrow at 9am. It will be having to do with autonomic issues. This is the whole reason we had to wait a month to come! I don't know a lot about the test but I know it's amazingly luck that Autonomic issues are Dr. F's area of interest just like Dr. M's thing is formula intolerance's involving sugars. HaHa, everything happens for a reason. I will update everyone tomorrow after the testing.

We are to be at the airport tomorrow at 2pm for our flight. Then we will be home!!! Hopefully we will have some time to kill tomorrow before we leave and I can update more then. Until then enjoy these pictures!

Before take off....

....30min after take off!

Welcome to Brenner's Children's

That's MY GIRL!!! Already a Wifi addict!!!!

Riley's Stomach while doing jumping jacks. Check out
the computer screen,

Dancing in the Window after a much need bath!

Working very hard!


Saturday, July 10, 2010

Going or Not Going.....???

Well, I know everyone has been going crazy asking me about the NC trip and if we are going or not. Well it looks like we ARE GOING!!! Ugghhh, this has really been a lot of work. I was surprised.... I mean taking Riley any where is never easy or quick much less 3 states away but we haven't even got to that part yet! The hospital in NC called to get all of her registration done over the phone. Apparently, they say there is no issues...??? I realized though they are just under the same impression we are that we are just waiting for final approval and normally Medicaid always back pays at least a month so I guess that's what they are going on. Bottom line we are going and if the "Medicaid Miracle" doesn't happen by Wed at 9am. All of the Dr.'s and Hospital bills will be my responsibility. But you know what I COULD CARE LESS! As long as my baby gets the care she needs the rest can always be worked out later. We really need this done, and it's not like the pyloraplasty will be her "cure all" by any stretch of the imagination. I'm really starting to get excited about the trip now that we know it's finally going to happen! And Thank you to Flights of HOPE for taking us there!!!!

Riley is continuing to swell up like Sponge Bob taking a bath... Every day you can see it get worse. Even over the last two days. As of Thursday she had gained 3lbs in less than 3 weeks. I'm almost scared to know what she's at now and just PRAYING we don't have any major issues pop up before we leave. It's getting to be around "that time" again, siggghhhh. We will be coming home Friday night and that next Tuesday we have an appt. with the surgeon to discuss everything that happened in NC and to schedule surgery. That means no rest in between basically since this surgery is going to be rough on her and not quick and easy by any means. But at least we are having things start to move forward once again. It was very frustrating to sit around and not really be trying to do anything.... Anyways, now I'm just rambling.

On other fronts Liam definitely seems to his happy wild self again thank goodness, I wasn't sure if I would survive all of that, LoL. So now on to packing and getting things together although I'm not sure exactly when since I'm working all weekend. Ohhh, well I'll find the time. Who needs sleep anyways :) Not Me!

Liam and I on his 4th Birthday

Trouble Maker! Trying to take apart her pulse-ox machine...

My Little Mermaid! She LOVES the water

Thursday, July 8, 2010

Let Me Off the Rollercoaster Already....

You know those really annoying kiddy rides at the fair that you are forced to ride with your kids...? The one's that go around and around and up and down.... It feels like you've been stuck on there for an hour and leaves you thinking, "ohh great, they're being nice to my kid or something and giving them like 3 turns"... But in reality you've only been on for 5min. Ya, that's how my week feels. Endless up's and downs and there's no end in site.

I literally DRAGGED myself out of bed at 7am today after another fun filled night with Liam itching and screaming things at us. Thankfully the nurse was here and we managed to make it out the door and arrive only slightly late for her Doppler study of the right subclavian vein (the vein in the top of the chest that her broviac goes through) and her SVC. After having to wait to long I knew something was up... They didn't want to do it. They were scarred of her age and medical issues blah blah blah... same thing as always. Bottom line a heart is a heart, Big or small! After finally convincing him to do it, he finally told me he didn't like the pics he got of the SVC and knew something was there but couldn't tell what it was meaning broviac vs. clot type of thing. He didn't even want to use the pics since he didn't want it to get blown off and something missed. So we were scooted on our way but having wasted enough time to have missed Liam's 9:15 appt, Grrrr!

One home I was actually able to get some cleaning, laundry, and phone calls done since Liam and Wil were still fast asleep. Everything has been going along nicely since the other day for our trip. That is until my phone rings this afternoon and the kids CMS nurse was on the other end (some days I need to learn to quit answering that thing) to tell me he had canceled my appt in NC but that everything was submitted to Medicaid. Long angry story short, they aren't submitting for Medicaid to pay for our trip on the 14th per se they are just asking if we can go basically. They will pay for anything on of after the date they stamp the approval, which can take up to 6wks, no back paying. So, hoping it can be done in 4 days is a joke... So, I was beyond frustrated. They can bill us for the appt in his office most likely but I think the chances of them then wanting to run all these tests if they now insurance wont pay is slim to none. Medicaid doesn't pay much but it's a lot better than none.

Liam slept until 1:15pm today... Without waking once. I don't think he has ever done that in his entire life! Actually I know, this kid is awake between 6-7am everyday, no matter what! He did need it though. His fevers finally seem gone today! And the rash finally seems to be fading and not itching quite as bad. Thank God!!!! This was a rough one.

Riley's appt. with the pediatrician was this afternoon, her usual weekly appt. I was more disappointed over all the hard work everyone put into this trip being all for nothing than anything. As soon as we sat down she mentioned something about going. I had then had to tell her the bad news. Without missing a beat the first words out of her mouth were, "Well who can we call at medicaid, is it in Tallahassee?" "I'll start making phone calls and we can AT LEAST try to get this done". I truly don't know what I would do without her. Some days I feel like I am constantly trying to paddle a boat upstream. It feels hopeless at times and you just want to give up but she is always there to lend a hand in winning our race and I am SOOOO grateful for everything she has done for Riley. So, she was working on it before we even left the office and I told her to call me if she found anything out. So, now we wait....

On the Riley health front. She has gained 13oz. since last Thursday and her IJ's (neck veins) are slightly distended but not horrible. The right more so than the left. BUT otherwise she looks great! She is totally back to Riley this whole week constantly happy as can be and running around like crazy. That's been really nice. Her B/p was actually quite good today too better than normal. I had called the office this morning to tell her the Doppler was useless basically. So, she called the IR cardio and the cardio who both said call the other one and have them handle it. Basically, I know where they are coming from, they are both great Dr's but both know are options suck and are essentially to put her through the same thing as last time. Everyone knows how that turned out. So, for know we closely watch and wait and pray nothing bad happens while hoping it gets better. We have set her next IVIG up for Monday we have scooted it in after her cardiologists appt. where they will be checking an echo on her and her weight and such again. Monday is a BUSY day and we have to pack.

The only other thing for today was Liam's new behavior/play therapist came out tonight for the first time. She was really wonderful and energetic. She has A LOT of helpful resources and is the absolute perfect person for our "team". She seems to really understand the whole situation and thinks she can really help him without placing unrealistic expectations on the family given our situation. So, that is exciting for everyone since this has been a huge concern and she will even be helping us get other services coordinated for him and helping get through IEP and starting a new IEP type of plan for him at school.

Well I'm exhausted and the time has gone by to quick tonight. I'm hoping to get some sleep now that Liam seems to be getting a little back to his norm. Hopefully the ride has ended here, at least for tonight anyways! LOL

Wednesday, July 7, 2010

Finally, A Little Good News! I Think....

So, after many frustrating hours on the phone with multiple different people and the help of two truly wonderful Dr.'s (to whom I am yet again forever grateful for!) WE ARE GOING TO NC!!!! I am so happy! I would have just so hated to have waited all this time and made a ton of plans all for nothing. Just start praying now something useful comes of all this! Since as of this morning we thought the trip was off we have a lot of unfinished plans to hurry up and get together. Thankfully, most of the big thing were already mostly arranged like flights and someone to watch Liam (I love you Denise!!!) so now it's a matter of everything else like packing for Riley... No small task.

On to Liam. He woke up with a temp of 105 today. That was fun.... but I was finally able to get that down around noon and surprisingly they have actually been under control today. It wasn't until around 5pm he started going up and I just headed it off with meds. He was up the ENTIRE night last night however itching. His rash has just all run together now and all you see is a white streak here or there everything else is just red and swollen from the rash. Literally, it's even under his hair! I was talking to the pediatrician this afternoon about both the kids and when I told her about his itching and the max doses of benadryl still not even letting him be able to sleep, she quickly called in some Atarax syrup for him. I think all the meds together had him all wired and he missed his "window" earlier when he was sleepy and is still rolling around and now itching again next to me at 1am. He has yet to go to sleep... Thank goodness it's time for more meds!

I did hear from GI finally after spending the majority of my day trying to get a call back from their office or even someone to answer the phone! But after much debate we decided Riley could wait to see GI until we get back from NC. I also heard back from Hematology, they want a Doppler of her Right Subclavian and the SVC. This will help to check for clots so I'm just happy someone is doing something! Well since Cardio decided to take the wait and see approach anyway. She is still doing good and being exceptionally good and happy even though she does probably have a sinus infection. But I'm glad she's happy.

Liam is out there FREAKING out so I better get to him! I'll update again soon....

Monday, July 5, 2010

What a Week....

So to start the day off, Liam woke up like this today... We knew he had started getting a fever last night but this is how our day started. Not fun after we were up all night because of his 104 temp. I swear it's literally always something or somebody around here! The Dr. thinks it's a reaction to the Septra he was on or of course a virus is always a possibility. I'm much more inclined to think it's a sulfa reaction since I had a severe reaction to sulfa as a child and my mom also has a bad allergy to it. That is why I have never let them give it to Riley. We will see how he is tomorrow. She changed his abx since his throat is very red and we have had strep running crazy through the house. Along with some other sinus thing that Ry and I have. Hopefully he will start to look slightly better by tomorrow. His fever was over 101 and usually 102 even with Tylenol and Motrin.

Anyway, we have had a lot of appt. and things since the last time I updated. Riley saw the hematologist, pulmonologist, opthamologist, and of course the pediatrician last week. The eye doctor said she looked great and he doesn't need to see her for 6mo. !!!! Wooo Hooo, always nice to have good news. The hematologist appt. wasn't very informative except we realized Riley has gained 1 1/2 lbs. in about a week and a half. This is worrisome due to the fact that it's mostly swelling and we knew the first sign of any issues with her SVC would be swelling in the top half of her body. He couldn't find any of her records from the visit for some reason and since he wasn't the Dr. who saw her in the hospital he didn't know any details except what I told him. He was going to try to find out if there was any testing we could do to check this but I never heard back from them and this was last Tuesday. We had a good appt with the pulminologist. He said she has had no apnea on her monitor in awhile so we can start trying to wean her caffeine again. He did agree with me that the apnea alarms she had been having were probably just due to hypoventilation rather than true apnea. So, once we have the caffeine weaned in a 2 or 3mo. we will repeat her sleep study. The pediatrician appt went good we checked her Lovenox level although I haven't heard yet how it was and did a blood cx just to be safe since she had a small temp in the office. We are sure though it is just from the obvious cold she has although you always have to be safe. She was also concerned with the weight gain. She has been getting the same amount of fluids and the same TPN formula for several months now so it's most likely not do to that. To make a long and very aggravating story short the final word from the cardiologist was that there is really nothing they can do right now unless they sedate her for an echo which even then isn't always accurate as we now know, so the only way of knowing for sure would be to do another cardiac cath which no one wants to do so soon. So, basically we have to wait until it's bad enough to be causing obvious major issues again.... GREAT! Especially since those like to pop up at the best times.

I also got a call out of the blue from Dr. Mehta who was very unhappy. He heard that we were now having issues with getting the insurance approval to go to NC next week. If we don't get to go next week he is absolutely not willing to wait any longer and wants her to have surgery immediately. Due to the major life-threatening issues she has had over the time we have spent waiting for this appt. He is no longer willing to wait even one more day. I had to agree with him though. I also heard CMS is trying to say she doesn't even need to go and they don't see the point. They think she just needs to have the pyloraplasty done and there is no need to go there since we would still do the surgery once we come home anyway. So, basically they are the one's who have made it so we will not be able to go. Or at the very least it's going to take a miracle for sure! This is also the same agency who had ABSOLUTELY no idea what all of Riley's medical problems really are and have no updated records since she was maybe 3mo. old. Lets just say they thought she only saw 3 specialists...... Trust me you don't even want to get me started on them!

Liam finally had his surgery on Thursday after all the time we waited. Everything went very well. He was able to remove the tube and patch the ear and re-tube it. I think we later found out the problem, He could have sworn he remembered telling us not to use drops in that ear after the first surgery since it was patched but I don't remember him saying that. It obviously isn't the point at least now we know why it probably happened. The ear drops they have you use will essentially "wash" the patch away before it has had time to adequately adhere to the ear canal. So, NO swimming for him until he is re-checked, lol. His nose looked good though, at least the Septra did something good for us! Everything was still open except for one of his maxillary sinuses so he re-opened it and then cleaned everything out. He did say there was still quite a bit of swelling in there so that is probably why he's having so many issues breathing still. Hopefully that will go down with some time.

Onto other things, my mom was able to come down for Liam's birthday which was on Saturday. She got in Thursday morning and the kids had a great time seeing her and we loved having her here too! Liam was able to have a wonderful b-day this year even with all the craziness. He loved thinking all the fireworks were for his b-day, lol! He LOVED all the attention and got spoiled rotten despite our poor nurse being sick that day and unable to come, Riley being sick, and the fact that it was to hot to go out and do anything. My mom left early on the 4th but I had to be at work anyway and besides it rained most of the day anyway so we weren't able to do much that night either.

For this week there is of course to many things to remember as usual. We are supposed to go to TPN clinic tomorrow since Dr. Mehta wanted her seen once I told him about the weight gain issues. The nurse never has called me back with an appt. though despite calling her and leaving a message at least once a day since I talked to him! We were also supposed to go and take pictures with Flashes of Hope since they were going to be at APH tomorrow. I guess we wont be getting to do that now since Liam is sick :( I am really upset about this, we had to cancel our spot last time they were here in March due to the kids having RSV... Guess we'll have to wait until they come next time. Liam has his 4yo check-up on Thursday and he'll also have his appt in the evening with his new behavior/play therapist. She is supposed to be wonderful and was very nice on the phone. I am really hoping she will be able to help us with some of the issues we have had lately. But I am just praying we have a nice quite week that involves no hospital visits. I think we all need it...

Here are a few pics from last week. My mom has all the pics from Liam's birthday and stuff. Once she sends them to me I'll post some of them.

Riley waiting patiently in pre-op,with one shoe on, for them to take
Liam. I think she was just glad it wasn't her, lol

Liam happily "drunk" on his Versed and Tylenol. At least

this time he didn't tell any nurses to take off their clothes!

Riley running around and being her wild cute self in the OR waiting room.