From our family to yours...

Merry Christmas!!!

December

My first son, Colton would of been 15 years old on the 15th of December. I was blessed to have met him and held him till his last dying breath. He will always hold a place in my heart. Happy Birthday son!! We were able to celebrate by going to the cemetary and leaving him a little Christmas tree. (Yes, I know his soul isn't there, but it makes me feel better.)


The anniversary of Billy Boy's cardiac arrest was on December 16th. I was so blessed to have him for the nine years that I did while he was 'normal'. We laughed, we cried, we talked, we prayed, we played, but most of all we loved. I thank God for giving me four more years (and counting) to continue loving this sweet child! Instead of focusing on the negative, I can now see it for the blessing it is... more time with him. Love him like Jesus!!! ♥♥♥♥♥


Billy Boy's new wheelchair got delivered... it's a beast!! It needs a few adjustments because he is so tall, but it is comfortable and they wanted us to have it in time for his January 5th surgery.

The surgery for fusing the rods to Billy Boy's spine has been switched to April 10th. (The surgeon will be on vacation at the end of March.) It is all in God' hands!!

Great News!

Billy Boy's mental status has been upgraded from vegetative state to "minimally conscious state" or MCS. Praise God that what we have known & felt all along, has finally been determined. Hopefully this opens up more opportunities for him.

Another bit of great news, his Baclofen surgery is scheduled for January 5th. The surgery to fuse the rods to the spine is scheduled for March 28th. This decision didn't come easy, we met, talked, and debated with many specialists over this. Finally they spoke with each other and this decision was reached. I was happy for two reasons; first, his pain needs to be addressed immediately so the spasticity doesn't do more damage. Second, I want the rod surgery to be last so there is no chance of exposure or infection to the rods. I left it all in Gods hands and he took care of everything.

Monet and I have been performing in the Christmas production at church and we are having a blast! She is very excited about Christmas and this year we have fit in a few charity programs as well. Jesus is the reason for the season and no better time to pay it forward. We feel blessed and are praying you all do too!! Merry Christmas!!!

November 2011

Wow, this year is almost over!! Although it seems like time is flying by, it can't go fast enough for us at this point. Billy Boy's pain is at an all time high, and not even the Botox shots are helping much at this point. It has to be the scoliosis. The plan is surgery January 18th for fusing the rods to his spine and surgery 4-6 weeks later to put in the Baclofen pump. Plans can change at any time, but for now, that seems to be it. We've been on an emotional roller coaster about what is being done when, and I'm done with that, just tell me where and when to show up. Meanwhile, we are visiting the slew of doctors that it takes to get authorizations for things like this.

Monet has been sick with all her allergy stuff, but is finally on the mend. Her headaches had been gone, now they are creeping back. I have to wonder if these two things are related? She scored very well on her grades and is once again on the honor roll. She is such a doll and a wonderful girl. She is taking saxophone, hip hop, and we are singing in the Christmas choir at church.

All month I have been trying to find one daily thing to be thankful for, it hasn't been hard, but it has shown me I have a lot to be thankful for. The biggest thing I am thankful for is that God loves me so much, he sacrificed his only son so my sins would be forgiven. Our salvation tops all other things!! I have also been blessed with an amazing husband, a beautiful son, a loving daughter, a supportive family, wonderful friends... the list goes on and on. I am thankful for the life God has chosen for me and I pray that I am living up to his expectations! Happy Thanksgiving... today and everyday!!!

October 2011

Ok, so October didn't turn out to be any easier than September. In fact things got worse and harder. I don't see it letting up until after January, so we'll just have to deal with it till then.

Monet is suffering from migraines and is taking medication for it. This has been particularly hard on her sleeping since they seem to get worse at night. The CT scan showed her adenoid was swollen from severe, chronic allergies. The result of living in Riverside, living right across from citrus park probably doesn't help either. I'm hoping that if we get those in control, maybe it will help the migraines.

Billy Boy was doing pretty good for a few weeks there. Got rid of his respiratory infection and was resting comfortably... until this week. Suddenly his pain is worse, whatever it is from; hip, back, growing pains, spasticity. Whatever it is, he's not sleeping and is visibly in pain. The good news is he is having the Baclofen pump trials on November 8th. (Hopefully, they've rescheduled it twice.) The bad news is the other surgery takes priority, so unless they can do it at the same time, it may be a while before he gets it done.

Billy (Dad) has had a rough month as well. First he had pneumonia, next he hurt his back and hasn't been able to help me lift Billy Boy, last he has acute bronchitis and upper respiratory infection due to.... you guessed it... allergies!

In all this, I've had a mess with nursing. My weekly day nurse has been out for a month and needs surgery next week. She'll be out till mid to late November. One of my night nurses was out for two weeks. Nurses calling in sick or just out, then having to train new ones just to figure out they wont work out then having to train new ones. All this and now money issues have finally caught up with us since we didn't get paid for the month of February. It's all starting to take it's toll on me!! However, when life gets tough... trust in the Lord!! And right now I have all my faith in him!!!

September

This has been a very rough month for us. Nothing but Doctor appointments, some good new, some bad. We had a bit of a scare with Monet, but it all came out fine. However we got some bad news for Billy Boy... he needs major surgery. It's scheduled for January 18th. His scoliosis went from 40% curvature to 90%, so he needs rods placed along his spine to straighten him out. This will help his pain. His quality of life is more important than anything to us. I'm a nervous wreck, but I have to leave it all in God's hands!!

End of summer

Summer has come and gone quickly this year. This is the first summer in almost four years that we've had the freedom to do things with Monet as a family. It is also the first summer that I haven't felt guilty for enjoying myself while Billy Boy was at home. We have three wonderful nurses that take such great care of him while I'm away, that I can actually enjoy myself. This summer we took Monet to so many places she had missed out on. She actually wrote a list of things that she wanted to accomplish this summer and she marked off 80% of it. I have felt very blessed.

On the other hand, this is also the first summer that Monet has had a hard time with what happened to Billy Boy. I believe it has something to do with her age, but she has had some very hard internal battles with whats happened and what could happen, to him, to us and to her. It's been very hard to see her go through this and very trying at times, but she's a smart girl and a tough cookie. Luckly, she has been able to express her feelings to us and our pastor, and wit God's help, she is learning to deal with it.

This is also the first summer Billy Boy has slept through the night. Ok, so it's been on and off, but I'll take what I can get. Night time is my shift and it is a hard shift when he is awake and mad. His hip is still bothering him and he is going through some major growing pains, but we are back on track with his Botox shots. They are also working on a new wheelchair that will fit him better and should be more comfortable. We hope to have it ready by Christmas.

We are rounding off the end of summer with lots of appointments for Billy Boy, Monet, & even Billy (who ended up with pneumonia.) This last week off, we are meeting with some friends, slumber party, getting ready for school, and a fishing trip for Billy, the it's back to our busy schedules.

Summer

Wow, I can't believe how long it's been since I last wrote on the blog. My apologies for not keeping everyone posted. So much has happened (nothing too exciting), I'm not sure where to start. Well, here we go:

Summer is in full swing for Monet, she's been out of school for almost three weeks now, and has no problems keeping herself (and us) busy. She earned straight A's and Honor Roll again, we are very proud of all her hard work. This time aorund, I saw her put more effort into it than in the past. She's been catching up with friends and now is preparing to go to summer camp next week. When she comes back she will be back to boxing and starting a workout program.

Billy Boy is growing like a weed. He's 150 lbs. and 5'11". Needless to say, he out grew his wheelchair and is in the long process of getting a new one made. This next one should last him till his 18 yrs. old. He's had lots of spasticity and hip pain, but received Botox yesterday, we hope that helps. We also started doing range of motion 4times per day, which is really helping.
He also had a consultation at the dentist and we hope he gets some work done soon. My next task is to look into ceiling lifts so we don't hurt our backs as this kid keeps growing.

Billy and I have been busy closing the program at work and starting the new fiscal year. Work is slim, but I'm grateful for anything we get at this point. Our nurses are working out pretty good, and we have this new found freedom we don't really know what to do with yet. Billy is till mountain biking and I haven't worked out in a couple of weeks, but next week I'll be back to boxing.

Happy 13th Birthday

Billy Boy turned 13 yesterday. He had a great day, slept till 5:00 in the afternoon, every teenagers dream. Had a small last minute party with Billy's side of the family. On the 14th, we'll have another small party with my side of the family. Of course first thing in the morning his best friend Joe texted me to wish his best friend a Happy Birthday. Joe is an extraordinary kid that has a special bond with Billy Boy, God bless them both!

We've been very busy with Billy Boy, Monet, work, Easter, school, working out, house, paper work, life in general. Always looking to maintain a healthy balance, usually with little sleep. Billy Boy is breathing better and doing good, but requires more care all the time, that means that I don't go to bed till midnight and I wake up at least twice to feed, give meds, vent, change, or re adjust him. It is something my body will just have to get used to, thank God for naps!

Billy Boy is about 5'10" long now so he is getting to where it is harder and harder for Billy and I to move him. I have to look at lifts and the cost to install them in his room this summer. Monet has been working hard on her San Juan Capistrano Mission report. She already got an A on the written portion, but still has to turn in the project and do the oral presentation. School will be out in one month, this school year sure went by quickly!

Donations needed!!

I am participating in the 2011 Ronald McDonald House Charities of Southern California Walk for Kids. It's a 5k walk/run taking place on April 10, 2011. The money raised will benefit Camp Ronald McDonald for Good Times. This camp has an amazing staff and group of volunteer counselors, Oncologist, and RN's that make the camp experience magical for kids with cancer and their siblings. The kids stay in cabins by their age group and are able to participate in horseback riding, swimming, fishing, archery, cooking, perform campfire skits, broadcast a radio station, attend a dance and so much more. This camp helps children fighting cancer (and their families) forget about their troubles for a little while. Camp Ronald McDonald for Goodtimes has brought our family some of our fondest memories, we are forever greatful for the experience. Monet still benefits from the camp experience every year. Any amount donated with be greatly appreciated, thanks for your support!!! Please take a minute to visit my webpage: www.walkforkids.org/mossfamily

Busy, busy

Wow, it's been crazy busy around here. All the agencies paid us a visit once Billy Boy came home. We bought more shelves to put in his room for all the supplies we have recieved. Took Billy Boy to get Botox. Called all his Doctors to schedule all his appointments for the year (except once related to future illnesses.) Cut Billy Boy's hair. Interviewed 6 nurses for new shifts they are adding to his care (if anything good besides him breathing comfortably, is that he is now eligible for more nursing hours.)

In the mean time, we celebrated Monet's 10th birthday. She then got a fever and has been sick for three days, so I'm taking her in tomorrow morning. I'm pretty sure Billy Boy is having some kind of reaction to a new medicine they put him on in the hospital (Pulmicort) which is causing him to get really agitated and abdominal discomfort. I've been calling the pulmonologist since last Thursday, but apperantly the message was never relayed to him. He'll be in the office tomorrow so I will get him to switch it then. Billy Boy has an appointment with ENT on Thursday. I'm being audited at work this month so I have to make sure my files are in tip top shape.

Life is hectic and it doesn't seem to stop, but I try to take it one day at a time.

Home from the hospital

Billy Boy is home from the hospital!! Smiled the whole way, it was amazing! That being said, now the real work starts. Wow, what a mess of supplies we have to go through, sort out, figure out, tag, and use. The new nursing agency was here amidst the chaos, trying to set up all their stuff and get all their necessary information. It's been very overwhelming, to say the least.

Billy Boy did really good on his last night at the hospital, but our machines don't have the same settings. It is something I will have to play with to figure out what settings will work for him, which means sleepless nights for me. Tomorrow Billy and I need to buy more shelves for his room so we can start sorting out this mess of supplies that were delivered. It's hard to believe, but we are still missing some items.

Tomorrow is another busy day. Monet has a dentist appointment & Regional is coming for a quaterly visit. Hopefully I can get some rest somewhere along the way. If only BillyBoy would fall asleep for a little while.

Winter Camp

Monet arrived at Camp Ronald McDonald for Goodtimes safely. I was a little worried since it was pouring and she sat on the very front row seat of the bus. They've gotten about six inches of snow so far, and I'm told she is having a fabulous time! There is no phone or internet contact with the kids, but I have my special ways of finding out. Lol! She'll be back tomorrow.

Billy Boy is waiting for ENT to come and remove his sutures and do the first trach change, so we can have our first training tomorrow. Praying it all works out so we can see Monet as she gets off the bus. Hopefully ENT doesn't screw it up by not doing it today or tomorrow morning. (It was supposed to be done today, but then they came up Friday and told us Saturday. That didn't happen, so now they called and said either today or tomorrow.)

Trach

Billy Boy got his trach yesterday!!! He did really well and had a really good first night. His life (and ours) should improve now. Drs. have assured us that this will make things a lot easier for him, and we know he can breath while he sleeps again.

We'll be at the hospital one more week as he recuperates from the surgery and we get trained on how to care for the trach.

BiPap

Billy Boy failed his second attempt with a BiPap. Hopefully that is enough proof for the ENT's (and insurance) to warrant a trach. Trying to move forward and onward to better things!!

Extubated

BillyBoy was extubated last night! Everything went well, soon after he was started on BiPap. Unfortunately it meant a sleepless night for me (and him.) As soon as he fell asleep the BiPap machine started shutting off and alarms were going off. The RT was in the room with me trying to figure out what was wrong, so she asked the lead RT to come in and check the machine. Right away he said it's him, his airway is obstructed. When he falls asleep, his jaw drops back, and his tongue blocks the airway. His CO2 levels started raising again, so they ordered a c-collar and a nasal trumpet (which leaves an open airway for the BiPap to work.) That should be enough proof that he needs a trach. We still don't know if the ENT's will need a sleep study done or not, so we are waiting to hear from them. Eventually, it looks like a trach will be in his near future.

Better morning

Resident came in this morning, he told Billy that their first main concern is that Billy Boy breathe on his own. He is doing that by breathing above the vent. Yesterday, when they did the trial, they turn down the vent and put it in CPAP (the CPAP opens up all the airways), if he has secretions, the oxygen can't be absorbed. That is why they decided to wait a few more days, give him a chance to get better before doing a trial again.

Dr. Abd-Allah had said midweek, Billy Boy is just listening to those orders.. Lol! Hopefully by tomorrow, all will be well. Then we can address the second concern, his apnea.

One step back

Ugh!!! Unfortunately, Billy Boy wasn't able to be extubated. His oxygen saturation levels kept dropping so they are holding it off till tomorrow or the next day. He is still having a lot of secretions, so I'm hoping that has something to do with it. I want this to go smoothly, but when it is the right time, I don't want to rush into it. Please pray that he doesn't need a vent or that God doesn't put me in a situation where I have to make a desicion I don't want to make!!!

Improvement

Billy Boy is doing much better today. He is going to the bathroom, taking a few breaths here and there, and coughing on his own again. He is off Morphine so he is more alert. I think tomorrow they will remove the breathing tube. The plan is to have a sleep study before we leave to determine if he will need a BiPAP machine or a trach, either way his quality of life will improve and we are happy about that! Thank you for the prayers, love and support!!!

Hospitalized

We went to the ER on Tuesday, Billy Boy was having a hard time breathing. He was finally admited Wednesday evening. The hospital is full and had to find space in PICU. Billy Boy

was not doing to well; fevers, Co2 levels were too high, shortness of breath. They did a slew of tests to see what is wrong with his lungs; infection/bacteria/virus. Those take a few days to weeks and we don't know the results yet. They have him on two different antibiotics. They also had to intubate him yesterday and his CO2 levels have finally dropped. They tried a CPAP and BiPAP machine, but apperantly his jaw is small and drops while he sleeps forcing his tongue to close his airway. He will probably require a trach before he leaves the hospital.

Right now, they are trying to get him better, then they will figure out if surgery is needed. Prayers are needed and appreciated!!!

Hospital

We are headed to the hospital, just waiting for the call. Billy Boy saw the Pulmonologist today and he didn't like the way he sounded. He is ordering a sleep study, xrays to determine if he has a partial collapsed lung or pneumonia, and an ABG (arterial blood gas test.) He also wondered if he might have a collapsed airway, but I didn't want to even think about that. I'm hoping we get some answers and he gets some relief soon!

Prayers, prayers, prayers

I haven't had a chance to wish everyone a happy, healthy 2011!!! We had a great Christmas and a nice and quiet New Year. This time of year is all about the kids and family, we all had a great time. Monet enjoyed herself tremendously and Billy Boy stayed healthy. We couldn't of asked for a better Christmas under the circumstances.

So far 2011 has been a trying year for us. Billy Boy stayed healthy through Christmas, but a couple of weeks into January, he got a lung infection and has been fighting it ever since. It has been a time of high anxiety, stress, and very little sleep. His oxygen saturations have dropped into the 70's and he is now on continuous oxygen. It's been a real battle and unlike normal kids, it's been a real fight for his life.

Billy and I have tried to maintain our sanity by exercising and napping whenever possible. We are also alternating times to be with Monet, our saving grace. Thankfully, God continues to give us strength beyond our own capacity, blessed are we!!!