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