The Ups and Downs

Well, Septmeber and October have held exciting things for Billy Boy.  He is enrolled in home schooling and started out with one teacher, but after she received a full time assignment, he ended up with another.  His old teacher (from when he had leukemia), is his teacher once again.  Mr. White is a great teacher and is trying to stimulate Billy Boy's brain in various ways.  We are really excited about having him.  Unfortunately, the district is telling us this is only temporary until he has an IEP.  We'll see about that!!

At the end of September, we had a scare with Billy Boy.  He started acting funny.. twitchy, uncomfortable, hot, sweaty, didn't want to be touched, couldn't sleep, and couldn't urinate.  He was fine one hour, the next he was acting weird.  I stayed up most of the night with him and in the morning we took him to the pain management specialist to check out his pump.  They interogated it and said all looked fine, which was weird to me because we've never seen him like this.  Again he was up all night, with the same symptoms but they were getting worse, so the next day we took him to the pediatrician.  He ran all kinds of tests on him to make sure there wasn't a bladder or ear infection, perhaps something we couldn't see.  The resident said he was displaying all the classic symptoms of withdrawal, but we hadn't taken him off anything.  We noticed a small seizure in the office, but couldn't be 100% sure if that's what it was. That evening Billy Boy had another seizure, this time I filmed it, it lasted about 15-20 minutes.  I decided to give him Neurontin which brought him some relief.  Next morning we took him back to pain management and showed her the video.  She confirmed the seizure, but didn't know why, that is until they checked to see how much Baclofen was in the pump and it was EMPTY!!!  The poor kid was having Baclofen withdrawls (which can be fatal.)  Now they are keeping their eye on the pump, but we believe it was human error.   It was scary and we don't want to go through anything like that again!!! On a good note, the Orthopedic Surgeon said Billy boy's spinal rod fusion looks great and is out of the danger zone.  We wont have to see him for another six months.

Halloween was fun for us all this year.  We went to a few parties and events so Monet got to dress up several times.  She was a scary clown. Billy Boy and his nurse were ninja turtles.  I got to go with Monet's class to her fireld trip at the San Diego Safari, we had a really good time there too.  Monet and I have been busy at church practicing for the Christmas production.  This year we both have parts as well as singing in the choir. It's hard to believe the holidays are upon us and this year is almost over... where does the time go?

It's been so long since my last blog, my apologies, but that means things are going well for the most part.  The issue with Social Security was never resolved, but they stopped requesting me to pay them back.  I did get a phone call that it was resolved but I guess I will never get it in writting.  People there don't ever call back either, I must have left them at least 10 messages and they never returned one call.  Weird!

Unfortunately, we lost another nurse and have two more to replace him. We know have five nurses, but it hasn't been consistent.  Hopefully next month we will all have it down.  Meanwhile, Billy Boy is doing great! His pain is pretty much gone and he is generally comfortable.  Thank God for that spinal rod fusion and the Baclofen pump!!!  We are in the works of getting a home teacher to come read to him a few hours a week.  I can't believe we are finally to a point where other things matter besides his pain.

Monet had a great summer; camp, the R ranch in the sequioas, sleep overs, movies, Disneyland, Sea World the beach and lots of crafting.  She started the sixth grade and is doing great.  We will soon be starting rehearsals for the Christmas production at our church.

Our work is still hanging on Thank God, but who knows for how much longer.  I would like to go back to school, but there are things I would have to fix here first to ensure Billy can get him up by himself.  One day... until then, I feel very blessed for how far we've come.

the case

A supervisor from social security contacted me, she looked into the case and aggreed that a mistake had been made.  Another supervisor followed up with a few questions because the system wasn't letting them enter the information.  I received a letter saying the case was being reviewed and some changes were being made, other follow up letters will be coming regarding the waiver and reconsideration.  I'm still waiting for those, but in the meantime, things seem to be moving in the right direction.

Post surgery

Went to the post op for the Orthopedic Surgeon, staples were removed.  His curvature went from 95% to somewhere between 10-5%. He started peeing on his own about a week ago. He's tolerating sitting for longer periods now (about three hours at a time.) He's using his passey muir for that long as well.  Things are really looking up for him.  Praise God!!

This last couple of weeks we've had our share of struggles, but when isn't that the case with us.  One of our treasured nurses has decided to take a job else where. He needed to do that to support his growing family, but of course he will be dearly missed.  Luckly, we found two nurses to take over his shift. One we already know and love, the other I met this week and knew she was a fit for our family the minute I met her.

Unfortunately, even though I received a call from my CR at Social Security telling me that my overpayment had been waived and I would no longer owe them anything, I received a letter stating that they will start collecting on the $15,000 plus that I owe them??? The amount went up!?! They also since have withheld Billy Boy's monthly check (which the rule for SSI receipients is to withhold no more than 10% unless you have written consent.)  I have called numerous times and my calls go unreturned.  Luckly my friend that used to work for SS returns from her vacation tomorrow night and hopefully we will file a complaint this week (forcing a Supervisor to take a look at the case.)  I also have the message that the CR recorded, so I have proof it was waived.  I think there's been a mistake, but it's still a headache I have to fix.

This week we adopted a new dog from the pound for Monet. Charlie is a sweet, black two year old chiweenie. Lucy and her get along as well.  Also, we celebrated Billy Boy's 14th birthday.  He's been through so much in his short life, every year we have with him is a blessing we don't take for granted!

Spinal Rod Fusion is done!

Well surgery went better than expected. He was in surgery for about six hours. Towards the end, he lost a lot of blood (his whole body's supply's worth.) About 50% of that is recycled back and of course he needed a few transfusions as well as platelets. His blood pressure dropped as a result. When we were finally able to see him at 7:30pm, he was swollen, but not as bad as we had imagined and he was awake. Since his blood pressure dropped and he was on medicine to bring it back up, they held off on pain medicine (especially in his epidural.) The next morning, he didn't look like he was in any discomfort, so I told them to hold off on pain meds in order to possibly get him off the blood pressure medicine. It worked and he was off it that day. He was also off the vent and back to room air. The next day he still didn't need pain meds and was fairly relaxed. They talked about sending him home Friday. The surgeon decided not to because he had lost so much blood, so he kept him in the hospital until Saturday.
Saturday afternoon we were discharged. No pain meds!! Unbelievable! I guess the pain he felt before must have been way worse than we thought. The only hiccup in the whole thing is he has urinary retention (very common after surgeries.) I learned and have been catheterizing him at home, but supplies are limited, so tomorrow I'm going to need to make a couple of phone calls. Other than that, things couldn't have gone better.
I truly feel that the Lord had his hand in this all. Tying up all kinds of loose ends. Even Social Security left a message saying that my case had been handled and I didn't owe any back pay. (I wont be completely satisfied until I have the paper in my hand, but I know God has that handled as well.) God has blessed us this week, of that I am certain!!!

Spinal rod fusion surgery

After countless appointments, every test under the sun, many authorizations... at last the day is here, tomorrow is Billy boy's spinal rod fusion surgery! The procedure will take 8-12 hours. Hopefully this will be the last time his back looks like this. I will post updates as I am available, but chances are I will be in the hospital until Thursday or Friday when I switch off with Billy. I know Jesus will be there with him and has this under control, so I am relatively calm. (Tomorrow I might be a little more nervous.) Please keep him in prayer!!!

Preparing for surgery

Today was the 5k for Camp Ronald McDonald for Goodtimes. Thank you to all that helped me reach and surpass my fundraising goal. We are 10 days away from surgery date. In the last couple of weeks, we have gotten authorization from all of Billy Boys doctors, ran every test possible. All that is missing now is the pre-op & anesthesia appointment and we are all set. I've had Billy Boy in "quarantine" the last couple of days since both Monet and Billy came down with colds.

Of course I haven't achived anything further with social security except for headaches. I'm still waiting for the redetermination and waiver. If I don't hear anything by the end of the week, I'm filing for a hearing. I don't get it, I call them every day and they don't so much as return my calls.

As always, I'm relying on God for strength, patience, support and understanding!

Madness

Wow, it's been a while! I've been so busy, I have forgotten to update the blog. This year has been tough, trying, and very stressful so far. We took a cut at work, but were grateful (since the whole department we worked with were layed off.) We've been fighting an uphill battle with Social Security to keep Billy Boys services. We got one case worker that perhaps didn't care for me, and has made my life a nightmare for the past two months. I know I didn't break any rules, so in the end if I have to file for a hearing, I will. Unfortunately, the timing is terrible since we are getting ready for Billy Boys next surgery. However, I'm ready to do whatever must be done!

I feel I'm being tested in all kinds of ways, but I'm keeping my eyes on God and relying on him for strength. April 10th is Billy Boys spinal fusion surgery. Scary.... but I know Jesus will be with him. Please keep us in prayer that all things run smoothly so we can have some peace in this home!!


Monet celebrated her 11th birthday. She had a small family party, but got to design her own cake, here is the creation she came up with...

January

Billy Boy has been so relaxed since he's been home. He is finally getting back up in his wheelchair regularly. But then, he started getting used to the dose he is on and was starting to show signs of pain. Not as bad as before, but reminding us we still have a ways to go. His next appointment was still two weeks away.

Then we had a horrible night last night, Billy Boy was up crying until 3:00am. He woke up crying again at 6:00. Called Rehab Dr. took him in and they increased the dose and added Motrin for his pain. Phew!!! Back in two more weeks... hooray!

Please say a little prayer for my BFF, Lisa. She's having surgery on Thursday to remove the tumor near her liver, then she starts Round 2 of chemotherapy. Pray that it's not in her liver or that it's gone all together!!! ♥♥♥

BTW... I had a wonderful birthday with Billy and Monet! Saturday I celebrate with the rest of the family.

Home with Baclofen Pump

Billy Boy is home at last!! It took a little persuasion on my part, but alas, he's here. Now he's pooped (actually, he needs to poop) and in some pain, it's been a long day for him.

Every time we see the rehab specialist, they will adjust the amount of Baclofen he receives until we get to the desired dose of the intrathecal medicine while deleting the oral dose. It will take about 3 months to get to where he is completely comfortable. Right now I'll take any amount of comfort we can get. Thank you God for this day!!

I am a little worried since he didn't have a bowl movement for a couple of days. We gave him an enema as soon as we got home and he went a good amount. He seems to still have quite a bit of residuals (170 cc.) His bowels are moving because I can hear it with the stethoscope. We might have to give him another enema tomorrow. If not call the GI. I've been keeping an eye on it since pain meds and anesthesia slow down the bowels.

Another thing to worry about or should I say pray about. Life seems to be leading me to many prayers. My life seems to be in turmoil right now and I don't know why. All I can do is focus on one thing at a time and leave the rest to God.

Baclofen Pump Surgery

Billy Boy had the Baclofen pump surgery. Success at last!!! He is much more relaxed today even though he is still in pain from the surgery itself. If all goes well, he should be coming home tomorrow! Hallelujah!!!

Surgery.. round 2

It's been a very rough week with one thing after another. We've been on an emotional roller coaster. Just praying this week ends on a good note with a successful surgery for Billy Boy... that will bring this family some much needed joy!!!

Baclofen pump surgery here we come... again. Lol!

Surgery was cancelled

Today was a very emotional day for us. On one hand, we were packed up and ready to go by 5:00 am after only getting a couple of hours of sleep. We got to the hospital weighed in, got a bed, we were meeting with the anesthesiologist when one of the neurosurgery residents walked in and told us the doctor called in sick today.... :(
I felt like someone punched me in the stomach. I was very upset, as we dressed him and packed up to go home with a crying kid. I couldn't believe it! This poor kid has been through so much, how much more can he take? Why him? Why does he have to go through so much pain?
After I had sometime to think and recover from the blow, I realized, Doctors get sick too. I appreciate him not passing anything unto my kid while he is cut open. Pain management is our top priority. I'm not mad at the Dr. or Loma Linda, I was upset at the situation, our hopes, Billy Boy's pain.
Again, all in God's plan and not a minute sooner.
After lunch the surgery scheduler called me back and rescheduled the surgery for January 19th, two weeks from today. Not the best news, but not the worst either. Till then, I'll pray everyone stays healthy for this next surgery.

Happy 2012!!!

Happy New Year!!! I have a feeling this is going to be a great year. A year of change, but in a good way. I'm excited and in everything, I hope to gorify God! The Lord is leading me in ways I can't even imagine.

Tomorrow is Billy Boy's baclofen pump surgery!!! Woot, woot! We can't wait till this poor kid gets some relief from all this pain and spasticity. I am so darn excited!!

I also want to "Thank" my family and friends for all their love and support, (you know who you are) we couldn't do this without you all!

I will take first shift tomorrow night so I will update on Friday.