Thursday, March 25, 2010

Oh I mean really???

I know that my posts have been rather negative lately, but you will have to bear with me, or move on to another blog for positive remarks. As my friend Fleck says, "I am not pooping rainbows today". Have you ever had one of THOSE days? I mean to the point to where you imagine running off to the circus, and fitting your fat butt into a tight red sequin outfit, and pretending to be a trapeze artist? Well I had one of those today. I took a second to consider just running out the front door waving my arms, and screaming at the top of my lungs. I figured that I really need my job, so I refrained from having a total freak out.

The day itself actually started off rather positive. I had slept, Jude SEEMED better, we were extremely busy at work, but I was making progress, etc. Then I get the famed call from Mike, not only is he extremely upset because Jude has thrown up again.......not once but twice, but they have cancelled our nurse AGAIN! This time they state the nurse is not medically necessary, based on no g button. Our provider who submitted for the 20 hour nurse was so let down, and you could hear it in her voice. She said she has never seen a child more deserving of nursing due to seizures than Jude. The problem is the state doesn't recognize seizures as a sole issue to get nursing. Jude's issues range from being legally blind to severe seizures and the rest of the list is very lengthy. Since we have been over his issues before it serves no purpose to repeat them, although I can say that Jude's last EEG showed constant seizure activity. He fits almost every criteria they require for nursing, but not every one. Also for some reason it makes more sense to the state to require another $50,000 hospital stays than to provide a part time nurse. We don't even want the 40 hours we will get once Jude had a g button, we just want someone to monitor Jude's stats, and help Jude progress. So here we are, Jude is in his second week of felbatol, and he is constantly throwing up. He cannot keep his food down, he is pale, he is weak, his seizures have GREATLY increased, and we all know his pulse ox is down. Yet he doesn't need a nurse right? He threw up so hard this afternoon that it went into his mouth, eyes, ears, everything! We aren't sure if the throw up is from his medication, or his cold he is battling. I know our case is still not as severe as many other children's, but goodness it takes a toll. Don't even get me started on those that live off state means, and the reform that won't help Jude. Lord have mercy, we will be here all day, and some of you may hate me by the time I step off my soap box. In the next few months we will have our nurse back, and we may even consider finding a way to pay out of pocket for our darling Charlotte. It's just crazy to me how many hoops we have to jump through.

So Jude fell asleep about 9pm, and we had put him in his crib to sleep prior to his final meal, and medication. I went in to check on him about 9:30, and I noticed he looked very pale. He woke up, and glanced at me, but didn't have much reaction. I then checked his nail beds and they were BLUE! I was really worried, so I went and grabbed Mike. After much protest I ran down the street to grab our neighbor that I knew was a PA. He so graciously came up, and listened to Jude's lungs. He said his lungs sounded pretty clear, but it was obvious Jude was "struggling" with mucus. He acknowledged that Jude's color was fluctuating, and he said I had a right to be concerned. He raved at how big Jude had grown, and praised Mike on being a great dad, which caused Mike to cry. Keep in mind my darling 6'1 husband was red eyed exhausted from lack of sleep so the tears flowed freely. He then said my medical knowledge of some specific terms fell under neurology, and went over his head. He said you could tell we have been dealing with this for awhile. He was so very sweet to Jude, and suggested we put him on his side. After hearing all Jude's medication, and symptoms, he was so nice, but shook his head and said "we are playing with match sticks", and he is right. It's a reality we deal with, and so do many other moms I know. Despite how accepting special needs parents are, we still wish our lives were quote unquote normal. We wish our children didn't have these problems, but they do, and we are accepting. We understand there is no circus waiting in the background with some glorious sequined outfit, and a cute little trapeze. No it's just our everyday life, where it's hard to run to the bathroom to actually use it, much less change in it into some great glorious costume. Although, our everyday lives teach us more than we could ever hope for, and for that we are thankful.

Before leaving our house the PA looked at us and said "Be thankful for everyday you have with Jude, because he will serve a purpose". Amen, he will, and he does. Scratch the trapeze outfit, I am back to pajama pants, and a cute baby in my arms.


Katy said...

Jenn, I am so, so sorry that this is happening to you guys.

If Jude is having mucus issues then you may need to have him tested for allergies. I don't know if you read Paxson's blog, but he had major issues with vomiting and such and it ended up being a long list of alleriges.

Erin said...


can't really think of anything else. hang in there, momma.

Candace said...

Oh man, Jenn. I cant' believe Jude lost his nurse again! I sure hope you are documenting ALL of this for future reference/need. Life with Jude must be a constant battle on the FINEST line. I believe that in time things will even out for you and for him but getting through these first few years and learning all the tricks and trade is a mighty, rough row to howe. Prayers coming for him and for YOU!

Judi said...

I wish I lived closer. I've been following your story from the very beginning.... on Just Mommies.

I think of Jude everyday and say a prayer as well. I'm sorry you have to deal with these insurance issues... I just don't get it either. There are so many out there that get help by abusing the system and then there are families like you that need it desperately and are turned away. My heart aches.

I'll continue with the prayers and hope for a better day for your Jude.

jocalyn said...

Oh Jenn, I'm sorry youre having such a tough time. It will pass, eventually!

Just to let you know, we have a gbutton, vision impairment, seizures, and give injections up to 6 times a day...and we don't get 40 hours of nursing!

On the bright side, with this administration, our MDCP and medicaid waiver programs we're lucky to be on and get respite from in Texas won't be going anywhere.

Maybe you can talk to your MDCP case worker and have them up your hours so you can pay for the nurse with that budget! That's what we ended up doing.

Hang in there.

jocalyn said...

one more thing, have them write an order for a pulse/ox so you can monitor his oxygen at home. That will also up your MDCP hours.

Bronx Cataldo's said...

Do you have a pulmo doc for Jude? The reason I ask we went to a pulmo doc and walked out with copies of scripts for portable suction machein, pulse ox, and both canisters of O2 and a O2 machein for the house. Everything got delivered to the house and we were shown how to use all the equipment. It wa also with his reccomendations we got the g-tube even though the peds, neuro and GI doc wanted him to get the G-Tube.
We give Finnian diet ginger ale which we take the fizz out and warm it up a bit it does help to settel the tummy and its much easier to clean up than formula.
Hugs form the Bronx

Caroline said...

You write so beautifully and honestly. We've been thinking of you and Jude today as we wore purple in honour of epilepsy awareness day. I really hope you come to a straight bit on this rollercoaster of life very soon!
Sending you lots of love and strength

Debbie said...

Can so relate...
great post and I have been dealing with many of the same exhausting emotions....isn't it crazy to think I CAN'T get any nursing in the state of WA??? crazy I tell ya!

Praying all of it starts improving!