ER

Billy Boy is having major reflux issues. At the request of the GI on call, we are headed to the ER. Will let you know what we find out.

Christmas

We made it through Christmas at home, with very little sleep, but we made it. However, Billy boy is having terrible reflux issues (perhaps the reason he got pneumonia.) We will call the GI in the morning and get an upper GI scheduled as soon as possible. Hopefully we wont aspirate before then.

The whole nursing thing has been very hard for us. I'm not sure if that will fascilitate things for us, or make them worse. We might have to consider having a nurse only three days per week (for now) so it doesn't seem so over whelming. Maybe we'll get used to it and will add more days later. Perhaps we just need to change one of the nurses and keep trying for a better fit. It will be easier to handle once the holidays are over and Billy Boy starts feeling better.

On a better note, we did have a very pleasant Christmas with the family. Monet said this was the best Christmas ever.

Urgent Care

Got up Sunday morning Billy Boy had a fever of 103.8. Took Billy Boy to Urgent Care and after 4 long hours, we were able to leave with antibiotics. Started them in the night time along with Mucinex. We are doing percussion vest & breathing treatments every four hours (including the middle of the night.) Today he woke up with a fever again, but we were able to bring it down much quicker. His chest junk is much looser and we are able to suction it out. Hopefully we can still beat this thing and enjoy the holidays at home.

Started a new nurse today, she will work Mondays and Tuesdays with us. She seems great, a real nice fit to our style. We start our new Wednesday thru Friday nurse this Wednesday, I hope she works out as well.

Monet is sooooo excited, and we are all really looking forward to a nice Christmas.

Sick

Monet still has a terrible cough. Now Billy Boy is sick too. Still has something wrong with his stomach, has junk in his nose and throat, and is runnng a fever. Please pray for them to get better quickly!!! I don't want to end up in the hospital for Christmas again.

Saturday Xmas Parties

Billy (Dad) & Monet went to the Ronald McDonald Christmas party at the Warner Brothers Studios. They got to see some of the camp families we hadn't seen in a while. Had to tell our stories a few times to some of the families that didn't know what happened, but they mostly enjoyed themselves. Monet even got a picture with Sam from ICarly.

In the evening Monet and I went to a party at Cindy's house (a friend from work.) She had a blast with Cindy's (adult) daughters. Monet always gravitates to the pretty girls. They even got her to sing karaoke. We partied till 11:00, Monet didn't want to leave. It felt nice to do something out of our comfort zone. The plan was to take Billy Boy, but he began to cry as we headed out the door. He is still getting over a virus or something funky with his stomach.

Now, Monet is getting sick. Threw up a couple of times Sunday and has a terrible cough. Pray she'll get better before Billy Boy ends up sick again.

Prayer request

Please pray for Monet, she has been experiencing some anxiety due to the upcoming days. My first son, Colton, passed away on December 15, 1996. Billy Boy went into cardiac arrest on December 16, 2007. She's afraid that her turn or ours maybe next.

I had planned to take those two days to grieve a little, but now will take time to reflect on all the ways we have been blessed. With her teacher's blessing, I will volunteer in her class on the 16th to spend some time with her. It will be another hurdle for us all.

Nursing

The nurse we got started last week. Her first day, Billy Boy was complaining and crying for hours, I thought it was gas or something. She told him "I'm leaving Billy" then turned around and told me, "I'm sure he's thinking good...leave!" I thought to myself "Nooo, he's not like that, he can't tell the difference" As soon as she left, he stoped moaning and crying! Still I thought it was a coincedence. As soon as she came in the next day and said "Hi Billy", he started moaning again. Then she barely touched him and he started crying! WOW!!!! He's in there and he knows that she is a stranger.

He had been turning his head to look for us, this nurse doesn't even know him, but can tell he is listening to everything. She told me I have been doing this a long time and have a handicap granddaughter myself and I can tell you that he IS in there and he IS listening to everything you say.

Today he once again was fussing and complaining. I went to help out at Monet's school, so as soon as I got back, I told her she could take off. Now remember, Billy Boy had been moaning and fussing, but as soon as I told her that he started to go "Ha...ha...ha...ha" My jaw dropped! The nurse said "Oh that's funny that I'm leaving?" Unbelievable, I'm pretty excited about all this. Next week a new nurse will start, hopefully she will be more to his liking.

Thanksgiving Weekend

Last week Monet and Billy (Dad) went to Disneyland, they had a great time together. Monet also went to work with me on Monday and was spoiled by my co-workers. Now she can't wait to go again.

We had a wonderful Thanksgiving, thanks to East Hills Community Church and Candlelighters. Also, thanks to my wonderful husband who spent days preparing, serving, and cleaning up a great meal. The next day we enjoyed leftovers with my brother and sister in law.

Saturday, I took Monet to see the Festival of Trees with Ms. Kathy and Kay. It was really fun. The kids played a scavenger hunt and Monet won a prize. Her class decorated a tree which we got to see displayed. We also saw the movie Bolt, which was quite funny.

Sunday we got a visit from my friend Ruth (that I have known since 6th grade.) Her son has leukemia too. It had been a while since I had seen her, so it was nice to have lunch and spend time with her. Thanks to her brother for the Etnie shirts, Billy Boy would (and will) love them! Thanks to her Mom and sister for the gifts for Monet, she's already working on the weaving. All in all we had a very pleasant week.

Thank you Lee's!

This year has been the year of trials and tribulations for our family. Our faith has been tested in so many levels. We have all questioned at one time or another, “Is God there for us?” At times we have felt lonely, hopeless, abandoned. However God’s love for us is so powerful that it always prevails. He has shown his love for us through our family and friends, and sometimes even strangers. This Thanksgiving we have been truly blessed by one of our long time friends, part of our family, the Lee’s. Through their love and generosity, we finally were able to achieve our goal of getting a Handicap access van. The impact they have had on our lives is immeasurable, and words of appreciation are not enough. However, for now, words and prayers are all we can offer. May God Continue to bless you and “Thank You” from the bottom of our hearts!

Revelation

As you could tell by my last blog, we have been a little down lately. Actually, quite a bit down. I have been praying a lot, asking God to help me get through this, to understand, to help me to have faith, to make sense of all this. I have felt abandoned. Then last night, I had put on "Finding Nemo" for Billy Boy. I was in and out of his room as usual. At 9:00 I went in to give him his last feeding and medicines when I heard Marlin (Nemo's worry wart Dad) and Dory (the forgetful friend) talking in the mouth of a whale. She was telling Marlin that the whale wanted them to "Let Go", that it would be "O.K". "How do you know?" he asked. Dory answered, "I don't, you just have to trust."

All of the sudden, I got the message. God just wants me to let go and trust him in what he is doing. It may seem silly, but I believe God talks to us in ways that he believes we will actually listen. Maybe he was talking to me all along, maybe he just hoped, that through "Finding Nemo"... he might finally be heard.

Next round of Botox

Billy received the next round of Botox shots. He's had a rough weekend with swallowing and stomach problems, which makes it rough for us. Some of it might be allergies, sinus problems or a cold, it's hard to tell. In a couple of days his relaxation will kick in and that will help his arms feel better.

This last couple of weeks have been very emotional for us. Good things are starting to take place. God is blessing us by surrounding us with people that want to help and it is humbling. Billy Boy seems to be communicating with us by opening and closing his mouth. On the other hand, with the holidays coming, I can't help but miss him terribly. The more time that passes, the more hopeless it feels. It kills me emotionally to trust God and what he has in store for us, when I see my son in the state he is in. It is a spiritual battle that is hard to explain, especially if you have no idea what it's like. Sometimes I wish I could curl up in a ball, but I have Monet, and that is just not possible.

I am also not feeling well and that brings me down as well. Hopefully in a couple of days, we will all start to feel better.

Dr. Lori and her missionary trips

We gave the toys, jewelry, make up, & money to Dr. Lori for her trip to Ethiopia. She was over whelmed with emotion. How awesome that we can help the children and women (fistula hospital) by such a simple gesture. Thanks to everyone that helped and donated items!!! I will be posting pictures as soon as she gets back from her trip. We will keep collecting things for her since she is going to Sudan in February. I am reposting an e-mail she sent me:

This is a picture of the little girl with Tuberculosis of her spine in Sudan. The next one is of an Iraqi child that has tetralogy of Fallot and is awaiting repair. The last picture is of me and an Ethiopian girl, she had a brain tumor which we resected, she came to know Jesus, but has since gone to be with him. I treasure the smiles that I've seen your toys put on their faces. They were SO happy to get Monet and Billy's gifts:) Thank you for helping to give joy to the little children in Africa. So far your toys and jewelry have been given to children in Sudan, Kenya, Ethiopia, and in Israel to children with congenital heart disease from Iraq, Jordan, Gaza and the Westbank! Now, off to Madagascar and Ethiopia and the slums of Kenya.
Will write you from there.
God bless, love you! Thanks for all your help. Hi to everyone, give Billy a hug for me!
Lori

Sleep at last

O.k., tried the Ambien earlier and it made a huge difference. The last two nights we have gotten much better sleep. I wont be so spaced out and crabby now.

Monet and Billy (Dad) went to our nephew Patrick & Sarah's wedding and had a great time. Here's a picture of Monet all dressed up for the wedding.

Busy, busy

Sorry I haven't had time or is it energy to blog lately. Billy has been sleeping worse than ever. Billy (Dad) and I are going on 4 to 5 hours of sleep per night. It's getting tough. We are taking him off the Ambien little by little since it makes him irritable and he doesn't fall asleep either. I might give it to him at noon time instead. We've had more appointments and updating insurance, trying to push regional into helping us, setting up a Special Needs Trust, selling the truck, buying a van, hyperbarics, etc....all with little sleep is starting to wear on us.

Some exciting news

We have a few exciting things to share. First Billy is eating bolus feedings during the day only. I have a theory that eating all night was making him gassy, therefore, he was restless. So far it's been helping, he still wakes up gassy, but not in the middle of the night. The other exciting thing is that Billy is finally reacting to a tickel on the bottom of his feet. It is just a reflex, and it is slow, but it is something he wasn't able to do before. We are also putting him in the wheelchair more often, so he has time to adjust to sitting in a straighter position.

Just when we thought we were done with appointments a few more popped up. Oh well, that's life. He will be getting his splints re-adjsuted, then he will be getting his first dental consultation since the accident. We will also be taking him in to get a flu shot as soon as they are available. We are in the middle of hyperbaric treatments, but should finish this set by the first week of November, just in time for the next round of Botox shots.

Monet received an award at school, (no surprise there.) We are very proud of all her hard work. She will read for hours and has found enjoyment in reading to Billy Boy. That benefits them both. She's made lots of new friends at school this year, but still remains close to her old ones.

Monet and I have been busy collecting small toys, jewelry, donations, and medical stuff to send with Dr. Lori (a missionary friend of ours that volunteers with Hands of Mercy) to Ethiopia. We are turning in all the donated items by October 17, if anyone else is interested. She will be there for one month, and next year she will leave in November for two years. She is an awesome example of living a Christian life. Although we can't all do what she does, she has tought me that we can all help in our own way.

Doctors appointments

Whew, all the appointments are almost over. So far, so good. We met with the Pulmonologist & Oncologist all looks well. Then we met with Cardiology, he is going to be taken off his heart medicine. He was on such a low dose, they don't believe it was doing much anyway. We also met with the Neurologist, that was my most nerve racking appointment. However, he was kind and willing to try new things, and we were pleasantly surprised.

We also met with CCS over his wheelchair, which seems to be a work in progress.

We still need to meet with his Gastrologist and get his splints revised. All in all, everything is going quite well. Billy Boy is content. Monet is happy to be back in school. We are coping with our crazy schedule.

I wanted to mention that one morning as we were heading off to hyperbarics, we stopped to get the mail. I opened a package that came from Harrison Elementary and started crying. Our Dear Mr. Cook sent us a yearbook which the old fourth graders had signed for Billy Boy. Billy Boy really loved his teacher and would of wanted to finish the year out with him. Thank you for thinking of us!

A bit down

We have been a little bit down this week. Someone asked me if it gets easier, dealing with what's happened, and I started to cry. It is so hard to portray the loss we feel. Put yourself in our shoes...would it be hard for you to not talk to your child for over 9 months? Would it be hard to not see him or her smile? Would it be hard to not know if they are in pain, feeling alone, scared or unloved? Would it be hard? Or would it get easier? My son wasn't born like this, nine months ago he could talk, walk, smile, laugh, hug, love.

We have become accustomed to his schedule and our lives revolving around his. We have become accustomed to the fact that we can never leave the house at the same time, or go anywhere together. We have become accustomed to the fact that we have no control over what happens to us, and we have become accustomed to the fact that we live by faith, love, and hope.

We miss our son and the joy he brought to our lives, I don't think that will ever get easier. Will life go on? It always does, but the emotional roller coaster we have been put through, I don't know if it will ever get easier... we'll just have to learn to live with it.

Hyperbarics

School is off and running again. Now Hyperbarics started again, back to the routines. This time around we know what to expect, so it's a little easier. Billy still has his hours all messed up and the medicine they gave him gave him insomnia. We heard of studies that involved Ambien, that awakened people in a vegetative state, so we would like to try that as well. We know with the grace of God something will work. We just have to figure out what that something will be for him.

In a couple of weeks we have appointments with Neurologist, Cardiologist, Oncologist, Pulmonologist & Gastrologist (that covers most of the gist's.) I will keep everyone posted.

G-tube

Monet had a tough first day at school. She was so nervous the night before, she made herself sick, and she couldn't fall asleep till midnight. Today was a different story, she got a goodnight sleep and had an awesome day. She still has one (of the two team) teachers to meet. She loves school!

We took Billy to see his Rehab Specialist this morning. The Botox shots are working:) She also put him on something to help him sleep, not that he has problems sleeping, but that way we can change his hours to ours. She also told us that we didn't need to get up at 3:00am anymore...YEAH! On another note, we noticed his Mickey (Gtube) was kinda sticking out farther than usual. We checked the balloon (that keeps it in place in his stomach), and it had popped. Good thing we just got trained on how to do it. Billy (Dad) changed it. I think we went into the wrong field.

School starting

Summer is over and it seems like it finished as soon as it started. Billy took Monet to Sea World to see it off, they had a great time. Billy Boy and I enjoyed our day as well.

Monet started school, with it came new trials. Hopefully it will all work out in the end. Billy Boy is doing good. He will be starting Hyperbarics next week (we will only do three days a week this time.)

We are still trying to sell the truck, we dropped the price down to $18,000 OBO if anyone is interested.

Great News!

It's been a few weeks since our last blog, my, how time flies. We have had a surprisingly pleasant summer. Of course there are things we still find difficult to do, but for now, we try to avoid those. We still have some down moments, with unanswered questions, but over all we feel hopeful.

We have been busy redecorating Monet's room and it is coming out beautiful! I wish I could portray how awesome, strong, supportive, sweet, loving, and trusting Monet has become through all this. She has been a blessing to us all.

Joe came to visit Billy Boy this week. He was filled with joy.. Billy had told him in a dream that he was going to wake up, we just had to be patient. We believe that more than anything. Billy has been turning his head in our direction again. If he cries, we can reassure him that he is OK, and he stops. Now, the greatest thing ever just happened, I asked Billy to stick out his tongue and after searching with his eyes, he puckered his lips. To make sure I wasn't just imagining this I asked him to do it six more times, then I called Billy (Dad) over to witness it. AMAZING! God is good! We feel his presence all around us.

Botox shots

Billy received his second set of Botox shots Friday for spasticity. It was just in time too, the spasticity had returned in the last week. We took him to church for the first time since the accident (it was a bit emotional.) We look forward to going again.

Monet is still roller skating, singing, dancing, and keeping busy.

Over all, we've had a very nice week, just need to sell the truck, so we can buy the van.

For Sale

For Sale:
2005 Toyota Tacoma Double Cab Short Bed Truck
50,000 miles-V6 4.0 Liter, Automatic, 2WD, TRD Off Road Pkg, SR5, Alloy wheels, New Tires, Bed Liner, Dual Front Air Bags, Alarm, Sliding Rear Window, Tinted Windows, Running Boards, 110 Plug Built into Liner, CD Player and much more. Great condition.

$19,000 OBO Contact Bill Moss at (951) 780-0126

First week after HBOT

We have had a really nice week. Billy boy still has odd sleeping hours, but he doesn't complain. They switched to 11:00am to 7:00pm, I figure in a while they will get better. We've still had running around to do, as we are trying to catch up on appointments.

Monet started singing lessons and is enjoying those as well.

We found the place we want to buy a handicap van from, we just need to sell our truck first. Appointments will go much smoother once we get a van!

Last week!

We are finally finishing our first 40 hour sessions of Hyperbarics. We hit a few road blocks along the way, but we will be done Friday. Yeahhhh! Improvements are usually seen a couple of weeks after you stop the treatment, so I'm looking forward to those. I'm also looking forward to getting him back to a normal sleeping schedule. Hyperbarics get him very tired so he tends to sleep all day, then he is wide awake most of the night without any stimulation. Next week, I am going to stimulate him during day time hours, so little by little we can go back to a better routine.

Monet has kept herself quite busy. She signed up for roller skating classes with Ms. Kathy (love ya) and is having a ball! She also had her first anxiety free sleep over. She is at the movies with Uncle Ron and Aunt Rene, Thursday Nana and Papa come, Friday she has a birthday party at the roller rink... busy, busy girl. Luckly all her friends have been calling and requesting play dates.

Hopefully now we will be able to do some things as a family.

We spoke at Loma Linda and it went really well. Hopefully some of the things we said made a difference. We love our hospital and want everyone that goes there to feel the same way.

This week

We have had a busy week. We finally received Billy Boy's new wheelchair (although it needs a few adjustments), it is so much better than the rental. We are still doing Hyperbarics (two weeks left to complete our first 40 sessions.) This takes a lot out of our schedule. Billy Boy has sure been relaxed this time around, it's been nice. We plan on starting our second session of Hyperbarics after Monet returns to school, so we can spend some time with her this summer.

Monet did Vacation Bible School at our church East Hills Community and we all went to see her Thursday evening as she declared her life to Jesus. It was great to have Billy Boy with us, and his first true outing outside of Hyperbarics and Doctor appointments. She also got to spend a day with our good friends Rachelle and Robert. They went swimming and had a great time. Friday and Saturday she spent the day with her best friend Erin. We are trying to keep her busy with local activities. She has been so awesome and understanding, it's incredible. We are so proud of her!

Tuesday, I volunteered to speak at Loma Linda to the Residents regarding bed side manners from a parents point of view. I'm honored they asked me and pretty excited since I feel I have a pretty good perspective on the subject. Thursday I have an ultrasound on my kidneys.

I am collecting small toys (Barbie size or smaller), jewelry, etc. for one of my Resident friends, Dr. Lori. She is going to Ethiopia in November with Hands of Mercy (a missionary group) and she passes out the toys to the ill stricken children she visits. They must be small in order to fit in her suitcase. In many cases the children have never seen a toy before. If anyone is able to donate any items, it is for a wonderful cause!

Relaxed

Even though we ran around all day yesterday, Billy Boy had a great day. Today he is also very RELAXED. The Hyperbarics are working Thanks to GOD!!!

Will be posting pictures shortly.

Back to Hyperbarics

We started (or should I say continued) Hyperbarics again. Billy Boy was very relaxed afterwards and slept all day and night. Today we couldn't go because we had an appointment with IHSS, but he stayed relaxed most of the day. Tomorrow we have a few appointments: hyperbarics in the morning, new wheelchair at 1:30, and post operation with pediatric surgery at 3:45. I have a feeling he wont be so relaxed tomorrow, but I will put it in God's hands. Friday we only have Hyperbarics, so it wont be so strenuous on him.

Monet enjoys the hour and a half that I get to spend with just her at the hyperbarics place. She has been a real pleasure through all this.

Father's Day

Happy Father's Day!!! I had a great day with Billy Boy yesterday, nice and relaxing. Billy (Dad) took Monet to her cousin Blake's 9th birthdya party and they had a really good time as well. The night went well for Billy Boy, but I was soooo nauseous (from the antibiotics.) I'm still feeling yucky! We plan on having a relaxing family day. Tuesday we start Hyperbaric treatments again.

Spoke too soon

Billy had a pretty good day yesterday. Today was a different story. He's been crying a bit more and has been really tight. I had to give him an enema and was worried he is having GI issues again (constipation). His spasticity increases any time he is uncomfortable adding to his pain. We just don't know day to day how he is going to feel. He needs to start Hyperbarics again.

I went back to the Doctors as well, it seems I still have a bladder infection. She switched my antibiotic and if the urine culture comes back positive, I will go in for an ultrasound of my kidneys. This has been a recurring problem for the last couple of years, and apparently stress doesn't help. (Oh well!)

Monet's last day of school was yesterday. She had an awesome report card and she pulled out her second top front tooth.

A better day

Wow, what a difference, Billy had a great day today. He was very relaxed and content. He also looked around when we called him. I pray this is a new start for him, I could really get used to this. Tomorrow the vendor is coming to see why the bath equipment is not going to work for him, and to give us suggestions on altering the tub or shower in order to make it work. His wheelchair should be ready this week too (can't wait!) We will restart Hyperbaric Treatments next week.

Monet had her end of the year picnic and had an awesome time.

I passed my annual audit (one less thing to worry about.)

Discomfort

Billy is still feeling some discomfort. It's hard to tell wether its from the junk in his chest, the surgery, his feeds, gas or something else. He was very loose and comfortable yesterday. Today he is very tight and moaning. Hopefully tomorrow will be a better day. Pray that he can have comfort and peace in his life again. In fact, we all need a little of that.

Monet pulled out one of her top front teeth. She was a little worried that she would look like a farmer. I'm sure when the tooth fairy comes, she will forget all about that.

Billy (Dad) found a tick on his shorts after working in the yard today. We will need to get the yard sprayed. Good thing we have a "bug" guy! :)

Home again

We are back. I can wear my PJ's to bed, go to the bathroom any time I want (was running a fever yesterday, went to the Dr's., had a bladder infection), take showers everyday, drink coffee in the morning, relax with the family, and yes, give Billy Boy the care he deserves.

Little by little, he keeps improving. Still coughing up left overs of the pneumonia. Tolerating feeds. Getting him out of bed and into the living room. Going to bed at normal hours, in a super soft comfy bed. Today he will get a haircut and a bath so he can feel refreshed.

Although we can't all go do things together, at least we can all hang out at home together. It's soooooo good to be home again!

Homeward Bound

We made it. Stayed in stepdown throughout the duration of our stay. We survived our neighbor's mother. Surgery went well, tolerating feeds. We are coming home! Hurray!!!!!!

Post op

Billy is doing well. He hardly needed any morphine after the surgery. Today he had his first bowel movement, and they started him on a small amount of feeds to make sure he will tolerate them. He even smiled in his sleep. He had a huge sneeze that caused him some pain, but he tolerated it. If feeding and bowel movements keep going well, we are hoping to come home by Wednesday. Can't wait to be back home again!

Monet received an award for Outstanding Academic Achievement last Friday. She was so excited and we are very proud of all her hard work!

Surgery at last!

Today, Billy recived the laparoscopic Nissen fundoplication. The surgery went really well. He was in recovery when I left and they were giving him morphine for the pain.

They start his feeds tomorrow, and we will see how he tolerates those. (He wasn't tolerating anything for days before the surgery.)

We are hoping to go to Oncology for the reminder of our stay, but step-down doesn't want to give us up (even though our roommate is soaking up so much energy!) We will talk to the attending Doctor and Billy's oncologist tomorrow, to see what they can do for us.

Hospital update # 4

We finally got an "Impendence Probe", it tests vomiting instead of ph, so they didn't take him off any of the reflux medication. Since he vomited around 6:00 am, I believe the Nissin is in order. Unfortunately, he keeps vomiting, so he isn't tolerating his feeds. We should find out about the surgery sometime today. Hospital time is very slow compared to the real world time.

His urinary and blood infection are gone. His pneumonia is almost gone. He just needs the Nissin, we can resolve his feeds, then we can go back to our life at home. We certainly can appreciate our home schedule much more now. Even though it is quite hectic with the Hyperbaric treatments, it is so much more productive. Between switching off, taking care of Monet, work, housework, the pets, etc. time management is of the essence. Life seems to stop at the Hospital.

He had another smile on his face at the hospital, although Billy (Dad) caught it while he was blinking.

Hospital update # 3

Just a quick note to let you know, we are still in the hospital. We have had a few set backs, besides the aspiration pneumonia, Billy Boy got a urinary tract infection & a blood infection. They had him on three antibiotics, then they put him on Zyvox for the blood infection and he started throwing up, again. He slept (or was very out of it) for three days and it began to scare me. He woke up around noon yesterday and began throwing up. His urinary tract infection is now gone, and they are giving him Benadryl for the nausea (which is making him sleepy again.) The GI team is fighting with the Peds Surgery team over doing the Nissin. (Peds surgery wants him to go through the PH Probe again, but I said over my DEAD BODY!!!) He is down to 1 liter of oxygen, but it looks like we'll be here for at least one more week. The GI Team and Peds Surgery are meeting tomorrow over the case... we'll keep everyone informed. Please pray that he gets what he needs to stop the reflux.

Monet and I went to the mall Friday and did a little shopping. I'm not a shopper by any means, but Monet is a fashionista. Monet asked Billy (Dad) to take her to a chili cookoff/car and motorcycle show on Saturday. She had a blast!

Hospital update # 2

Billy is finally doing better today. He kept getting fevers and since he had the catheter and a huge, runny BM, I asked them to test his urine. They took a chest xray, blood samples (from his port and arm), blood cultures, urine samples and cultures. So far they have found a urinary tract infection. Today they asked if we would move down to basic. Billy was quite upset at the request, since we would probably be on our way home instead of staying there another week if it wasn't for some senseless mistakes. I spoke with the Resident and said I felt they owed it to him to keep him in Stepdown or Hemoc, she got the picture.

His Nissin will be scheduled for sometime next week, giving him some extra time to recover from this ordeal.

Wrong doses

Billy was still having a difficult time with his reflux yesterday, he was also running a fever, and his secretions were thick. I kept saying something was wrong and started asking what they were giving him. I found that the much needed Reglan, hadn't been given four times a day. Then I found out they were double dosing his Robinul. A resident Doctor came in around 11:00 last night and went over the list of medications and the doses with me. We figured out that they messed up on four of his medications. Doubling up on some and under medicating on others. The result was a fever, retaining urine, and thick secretions. Appartely a student wrote the orders and messed up (I had given her a chart with times and doses of all the medications, so I guess she couldn't copy.) Thank God it didn't end worst than it did!!!

Today Billy is doing soooooo much better. He is back on feeds and on 1 liter of oxygen. By tomorrow he should be off oxygen completely. After the pneumonia ends, he will recive the Nissin fundoplication... finally!

Hospital update

Today he is back to having GI problems. He wont tolerate his feeds. He isn't urinating so he needs a catheter. They are going to check him for a urinary tract infection. Although things keep coming up, things are improving from the pneumonia.

Aspiration Pneumonia

He has aspiration pneumonia, therefor, he no longer needed the ph probe. They started him on antibiotics last night. He had labored breathing and needed 10 liters of oxygen and saturation was at 89 - 92, by this afternoon he was at 2 liters of oxygen and saturation was at 98, so he is getting better. Once he is better, he will get the Nissin Fundoplication. What an ordeal for something he should of gotten before we left in the first place. Such is life! At least we are at Loma Linda, where we feel at home, and we get to catch up with old friends.

Hospital

See, what did I say? He threw up four times today. Aspirated, sounds chronic, is on oxygen... and we are on our way to the Emergency Room. Maybe now they will say he has reflux!

Keep him in prayer.

PH Probe

Billy was doing well with Hyperbarics, he even came home looser (from the spasticity) than he has been. Then came Friday, he has to be off Prevacid for 72 hours for the PH Probe (to determine, once again, whether or not he has reflux. Which I would think spitting up the formula would be enough evidence.) He did O.K for the first 24 hours, then came Saturday and they took him off Reglan (helps to digest food and move it along the bowels.) He did O.K. for the first 19 hours, then he started breathing hard, coughing, and now he has been moaning for the last three hours. I checked his residual (how much food is left in his tummy) so I could vent his line (release gas from his stomach via Gtube), and there are at least 300ml's still in there. Which means he is not digesting his food, hence the moaning. This is going to be a long two and a half days until this stupid test is over. Pray we all make it through this in good mental and physical health. I would hate for Billy Boy to get aspiration pneumonia to prove that he has reflux.



Oh, yeah, something weird happen to me this week. I was taking a shower and Monet noticed somethin in the middle of my back. She started freaking saying I had a spider, but upon further inspection, it was a tick. Now anyone that knows Billy (Dad), knows that he is a clean freak, so it's not do to a poorly kept house. The best we can figure, our dog Lucy (who loves to play outside in the dirt and dig for squirrels, gophers, and lizards), probably brought it in and left it on the couch for me. The bite turned into a bullseye and I had to be put on antibiotics so I wouldn't get Lyme's disease. That was a first for me and now that Lucy is on a treatment, it will hopefully be the last.



Does the madness ever end???

Mother's Day present

I received an awesome Mother's Day present: my husband made me a great breakfast and an awesome dinner, my precious daughter is spending a wonderful day with me, and Billy Boy held his head up for a few minutes all by himself! God is good!

It's later now, I miss my baby boy. Gosh he made me laugh and I loved him so much... this sucks, these times when it's quiet and all you have are your thoughts. I'm sorry, he was just such a great kid, I miss everything about him. It still seems so unreal. In the morning I'll feel better again, God always gives me renewed strength in the morning.

A smile

We woke up this morning and as we were getting Billy Boy ready for his Hyperbaric treatment, we came in the room to find him with a huge smile. By the time we got the camera, it was fading but at least we managed to get a picture of a little one. Second day in a row...Yay!!!

Billy's Birthday

We celebrated Billy's 10th Birthday! We all had a great time. His best friends Joe and his cousin Blake came to celebrate with him. Joe read a card he had made for Billy and there wasn't a dry eye in the room. His cousin Blake wrote that Billy was his hero. Billy turned to look at his friends when they would get close to him. Monet did a great job hanging out with the boys. We all had a great day.

Today we are back to Hyperbarics and our hectic schedule. Sometimes it gets hard to manage treatments with Doctor appointments, school, work, home, etc. At least Billy is turning to look our way more often, so we are looking forward to more improvements.

I am asking for all of you that follow along to please... keep Billy's best friend, Joe Munoz, in prayer. Monday, I received a call from Joe. He had been crying uncontrollably for an hour, he misses Billy terribly. He told me he didn't have other friends, Billy was the only friend that made him feel special (not different because of his ear deformity.) It just broke my heart. Billy and Joe had a special relationship and I would love to see it continue.

Thanks Jodie and Blake for taking and picking up Monet from school daily (and Thanks to Judy for volunteering her), we truly appreciate it!!!

GI Problems II

We are still having GI problems. A PH Probe has been ordered in order to determine, once and for all if he has reflux. If he does, then the surgery team will consult him for a Nissen fundoplication. If he doesn't, then they will switch him to Pepcid for gas.

It is Billy Boy's 10th Birthday on Sunday and we have decided to throw him a little family birthday party to celebrate life!!! I thank God for everyday that he is here, and that I get to kiss him Goodnight.

See, a friend of Billy's (from his classroom) passed away last Friday. He dug a tunnel in the sand (volleyball court) in his backyard. It collapsed. Last Friday he went into cardiac arrest at Loma Linda and passed away in his fathers arms. Through this tragedy, I have regained a new found appreciation for life. I don't know how, but my son lived through it all and I get to kiss him everyday and tell him I love him. Therefore, we decided, a celebration was in order.

GI Problems

We are still experiencing GI problems, will keep everyone informed if we see any improvements.

Home again

We are back. That was a nice and short stop at Loma Linda (well, short anyways.) What a messy ordeal that was, it ended up that Billy Boy's colon was filled with s***, well stuff. They gave him something called "Go Lightly", which didn't come out so lightly. Billy (Dad) dealt with the worse part. Hopefully this week he will tolerate the feedings and we can go back to Hyperbarics next week. At least we caught it before it became a huge problem. We didn't get much sleep this weekend since Billy Boy was going every half hour, but slowly, that will decrease... I hope!

Hospital

At the request of his GI specialist, Billy Boy will be admitted to the Hospital today due to the vomiting issues.

There is a Rootbeer Float Fundraiser for Billy Boy at Albertson's (corner of Lincoln and Van Buren.) If you would like to join, help out or donate, it would be much appreciated!!!!

Will keep you informed if we hear any news. Pray for his health!

When it rains, it pours...

We had a few set backs this week. Billy Boy threw up, again, he has been grumbly, again. He has been constipated, has reflux and is gagging. His stomach has been so gassy and has no way to release it, so I sit and vent his line all day long (which takes forever!) Wednesday we took him in for an abdominal x-ray. Of course, he had a huge BM stuck there, so we gave him an enema today and cleared him out. We also started him on a stool softener. We are hoping that this helps keep him regular, but we also hope it helps the gas in his stomach, the reflux, and the gagging. We'll see what happens.

We only went to the Hyperbaric Chamber once this week, so we could take care of his health.

Work has had a few set backs as well. Right now we are feeling like "Life Sucks" and it's hard to stay positive. It's hard to enjoy the fact that he is still alive, when you are constantly worried that this could be his last breath. It's one of those physically and emotionally draining weeks and it's not over, pray that the next few days are better.

First week of treatments

Well, we finished our first week of treatments. We are down to 20 feet of pressure. Billy Boy seems to be moving his feet more. He also is looking towards the sound of our voices more. Unfortunately, Thursday he threw up and aspirated on a little of it, from then on he had a rattle in his lungs. We didn't take him to the Hyperbaric Center that day so that we could keep an eye on him. Friday, we had a long day with Hyperbarics then a visit to the Oncologist for blood work. We were out from 8:00 to 2:00, by the time we came back, Billy sounded horrible and was running a fever of 101.2. Needless to say we had to put him on Oxygen that night and skip Hyperbarics again. Thank God for the Percussion Vest, we were able to up the treatments and start suctioning some of that gunk out of his lungs. He was able to cough and sneeze a few times and sounds better already.

We believe God brought us to that Hyperbaric place. Last Friday as Billy was getting in the tech (owner), Susan, asked if we could all pray prior to starting. She asked God to deliver the oxygen to the right places to help heal Billy, because we all know it is only God that can heal Billy. How awesome was that? If he can lead us to it, he can lead us through it!

Billy and I look forward to reading all the comments in the blog, and although we can't answer back, please know that we are greatful to see that everyone is enjoying it.

Also, Thanks once again to our church East Hills for your continued support.

Hyperbaric Oxygen Chambers

We started treatments!!! What a crazy week. We have been under so much stress. The whole process last about three hours (driving, preperation, treatment.) Treatments are five times a week, the first session will be for 40 treatments (around two months.) This takes up so much time and energy, but if we see any improvement, it will definetly be worth it. Although we both have been taught what to do in the chamber, Billy (Dad) has volunteered to assist Billy Boy. It's kinda trippy, the whole thing, but the walls are filled with different success stories that give us hope. God brought us through this journey for a reason.

The Hyperbaric Chamber simulates underwater diving pressure, while the patient receives 40 litters of 100% oxygen over a 60 minute period. This allows oxygen to penetrate were it normally wouldn't in a normal atmospheric pressure. It can promote the development of new capillaries, the tiny blood vessels that connect arteries to veins. It also helps the body build new connective tissue.

Billy had barely started moving his feet a few weeks ago, in the HBOT, his feet are moving constantly. It shows us the oxygen is getting to those parts that it hadn't reached before. He is breathing much better now and the spasticity in his arms seems to be improving. Since it affects everyone different, we don't know how many treatments he will need in all, but we are excited to see what God has in store for us.

A Day in the sun

We went out for a few minutes, but once his new wheelchair is ready, we plan on taking him on some walks. A little sunshine will do him some good.

Quick tip: I just found out that if you click on the photos, they enlarge. (Use the arrow to go back.)

Splints

We finally received all of Billy's splints. There are ones for the feet, wrists, and elbows. He is wearing at least one set at some point throughout the day and night. The problem with all these splints is we have to take them off and on everytime we change his diaper. They also started leaving little marks and we had to take them in to have them readjusted. I think they should work now.

We are starting Hyperbaric Oxygen treatments. We meet with them this week, so the next two months we will be very busy. We have to go there 5 times a week. We'll do our best to schedule that around Monet, work, school, doctors appointments, and what ever else pops up along the way. Please pray that this is the door God wants opened for Billy Boy.

As for us, we are holding up. Some days are tough, some days are better. We miss talking and playing with our son... plain and simple.

The Weekend

We had a pretty calm weekend. Billy is doing great with his splints. We started standing him up for one minute at a time so that he start bearing weight. We don't want him to loose bone density. He kind of freaked out at first, but he quickly adjusted and doesn't seem to mind. He started moving his feet and legs somewhat (while sneezing or yawning, and sometimes when I tickle his foot.) I really liked the Hyperbaric Oxygen Treatment place in San Bernardino, but it is pricey ($150 a treatment and he needs 40 to begin with), so I am checking a place in Fountain Valley and Irvine (a further drive, but if it costs less, it might be worth it.)

Saturday, Billy and Monet went to Wild Animal Park in San Diego with his sister (Judy), niece (Jodie) and her son (Blake). They had a nice time, but Billy had to try and deal with his feelings of not having Billy Boy there, while trying to have fun with Monet. It's hard to deal with the emotional side of all this. Sometimes it's easier to be at home with him, that way you don't have time to let those feelings creep up on you, although it's not fair to Monet. It's tough, but we have to deal with it for now. We try to keep positve, because we know God has something amazing in store for us!

Still pretty good

Billy had the ultrasound done. Everything looks fine. His intestinal problem was the boulis feedings. Now that he is on the pump most of the crying has stopped. He's a little constipated, but we are going the old fashion way on this one... prune juice via G-tube.

Billy's splint are working awesome (thanks to the Botox shots!) Monday he gets his wrist splints and possibly his leg splints will be ready too. We are also working on his range of motion exercises.

I spoke to a Hyperbaric Oxygen Chamber place near me and so far I am pleased with the personel. I look forward to working with them and hopefully seeing a positive result. At this point anything is positive (besides no one dies from too much oxygen, yet plenty of people die from lack of it.)

I wanted to thank a group of friends "the Burgers" who got together with a skateboard company Pocket Pistols and made Billy Boy (Rebar) his own board. They then had a bunch of proskaters and their friends sign it. Pretty awesome... Billy Boy would of loved it! Hopefully one day he will be able to see it and enjoy it too.

A visit from Joe

We've had two days of very little crying. I guess the drip, Botox shots, Reglan and valium combination has finally made a difference. Yesterday he had the splints on for hours without complaining. Billy had a visit from his best friend Joe (Joe was born with a deformity in his ear, and they became best friends because they were different. The last day Billy was in school, he pulled Joe aside and told him that no matter what happened to him they would always be friends.) It was good for both of them to meet again.

For those of you that don't know, Billy had been telling us that he would die after he finished chemo. He spoke to his oncologist about it, and he reassured him that he was low risk. We had him in counseling for it, his biggest fear was how I would react if something happened. Two days before this incident Billy asked me how would he know when he got to heaven. I explained that Jesus would greet him at the door and he would feel the same comfort he feels around his Dad and I. I also mentioned that Jesus was the best cuddler, and that made him a smile. The night before, Billy Boy asked that I sleep with him in case he died that night. The next morning at 10:00, his heart stopped.

I am still researching the Hyperbaric Oxygen chambers, and hoping something can bring a smile to Billy Boy's face.

A busy week

Wow, we had a busy week. Doctors appointments like crazy. We are finally seeing some improvement. The botox shots have kicked in, we received his elbows splints just in time, and he is tolerating them for about one and a half hours at a ninety degree angle. We are still waiting for his wrist splints and his leg splints. He is doing better on a twenty hour feeding drip and they added Reglan for the reflux. His neurologist also wants him on a constant low dose of Valium for the spasticity (which apparently can attack the GI organs as well.) His breathing is still chronic (noisy), but we can only address so much at once.

On the other hand, I am feeling a bit down lately. I miss my boy. We were so close... I would do anything to have him back, talking to me, making me laugh, cuddling with me. At least a smile, a simple smile would make my day. Pray for a smile for me, please!

After Botox

Well, we made it through the weekend. We had a rough start... Billy had a hard time after the Botox shots. He had a tough time swallowing and breathing, he almost seemed to aspirate. He cried a lot too, which didn't help. He had major reflux, so we took it upon ourselves to stop the drip feedings at night. Our executive decision paid off, we started feedings as soon as Billy (Dad) woke up and shut them off a little after midnight, and we all got some sleep.

Today, he did much better. We are already seeing some relaxation in the arms, so I took advantage and did some range of motion in his arms a couple of times today. He didn't cry too much and we were able to move him into the recliner in the living room for a few hours. He even coughed a few times on his own again.

Monet had a good weekend, on Friday she had a girls night out with my friend Tracy and her daughter. They went to the Elephant Bar and to the movies. Saturday, she spent some time with her Uncle Ron (while Aunt Rene helped me with Billy Boy), then I took her to a classmates cowgirl birthday party. Sunday we played bubbles, made some puppets, and visited with Pete and Leisa (Thanks!)

We have five appointments coming up this week, so I will keep everyone posted.

Botox shots

Billy was able to receive the Botox shots yesterday morning! Praise God!!! We should see improvement within the next five days, however the tendon in his arms has already shortened and the most he will relax is to a ninety degree angle... but we'll take it. He was a little pale, so we kept him on oxygen till this morning.

On the other hand, he has been having Gastrointestinal problems. We received a pump today and we'll be trying 20 hour drip feedings for the next six days to see if he digests the food a little better. If the crying doesn't stop, he may need to be hospitalized to see what is going on. If it does help, then eventually, we will be switched to 12 hour drip nightly pump feedings. He also has thrown up a few times and with the risk of aspiration, he will require a nissin fundiplication so that the food can not come back up. I think at this point, that might really benefit him.

We can only take things one day at a time, one step at a time, and pray that it will all get better... what else can we do?

Improvement?

After a rough weekend, I called Palliative care and they will meet us at our next Dr.'s appointment, from there on they will be making sure that Billy Boy's pain is handled in a more timely manner (apparantly pain is their department.) For those of you who don't know, Palliative care is like Hospice, but for the living.

Pheww! The last two days have been better... knock on wood. We finally received the new formula so hopefully it will make a difference. We also received a better fitting vest for his percussion machine and he has coughed quite a bit more (which helps clear out his lungs.) Keep him in prayer so he can remain healthy enough to get those much anticipated Botox shots.

Saturday

Ok, so I spoke too soon. Today was pretty bad. Billy Boy cried all day and half the night. I am emotionally drained again. I can only hope tomorrow will be a better day.

Appointments

We have had a busy week. It started off with an appointment to the cardiologist (all is well, still can't figure out what happened.) Next we visited Johnsons Orthopedic and he got fitted for splints for his arms. If all goes according to plan, he will get the Botox shots next week, they take approximately 5 days to start feeling the effects, and in that time the splints will be ready so that he can start wearing them... that is if it all works out.

We also visited CCS and he got fitted for his custom wheelchair (it will take anywhere from two to three months to make.) Billy (Dad) was excited because we got to choose colors, etc. We also got an evaluation from the Occupational and Physical Therapists from CCS (the experts.) These are the therapist that will follow him till he is 21 years old. In a couple of weeks they will come with the vendor to assess the house and see what other equipment is needed. Yay!!!! Billy Boy will finally get to take a shower (not just a sponge bath, which by the way, THANK GOD for Rachelle and Mom who come and help Billy and I with bath times once a week.)

Monet received her report card today... all A's. "What did you expect?" her teacher says, "She's perfect!" Monet (and us) have been handling the situation we are in a little better this week. She reads to him, watches TV with him, she even took a nap with him. It's been a lot better (emotionally) this week (I no longer cry every night), although I am physically drained. Hopefully we will figure out Billy's pain soon and we wont have to listen to his cries of agony anymore. Poor baby!

Monet's Birthday

We celebrated Monet's 7th birthday yesterday with the family. It was nice to feel normal for a day. She had a great time and Billy Boy was content. The noise of a family gathering seems to soothe him.

Today it was back to reality and Billy's crying. We went to his cardiology appointment today. Nothing new to report, everything seems fine for now. He will stay on a very low dose of the arrhythmia medicine. I have to say I love all his Doctors (so far) and the care he receives at Loma Linda (our home away from home.)

The GI Team

We went to see the GI team yesterday. (What a humbling experience.) We met with a dietician, the GI doctor, and a social worker. Billy Boy cried almost the entire three hours we were there. They changed his formula, added Gas X, scheduled an abdomen ultrasound (they want to take a look at his pancreas and gall bladder to make sure he isn't passing a stone or dumping.) He may need a full body bone scan to make sure there aren't any broken bones or dislocated joints from the spasticity. We are all trying to figure out why he is crying so much, hopefully we will get an answer. His botox shots have been rescheduled for March 13 (pray that he will be well by then.) We have a series of appointments for next week. I will keep everyone posted.

Thank you's

Just wanted to mention that I forgot to "Thank" some of the most important people in our life... our family. Dennis, Bonnie, Ron, Rene, Uncle Ramon without getting too emotional I can't thank you enough. Mom, Dad, Judy, Jodie we just couldn't do it without your help. Matthew, Samantha, Penny thanks for everything. To everyone else in our family thanks for all your love and support.

Rochelle & Robert you guys are amazing and we value your friendship.

Also "Thanks" to East Hills Community Church for your continuing support & understanding.

Fundraiser at the Park

Thank you to everyone that attended or participated in the Fundraiser at the Park or the fundraiser at work. We truly appreciate all the love and support we have received over the last several months. Although we struggle with our faith daily (God understands), your prayers carry us through each day. A special Thanks to Cindy and Stefanie in Azusa for all you guys have done for us. An extra special Thanks to Ms. Kathy for being a part of our lives, we are truly blessed to have you.

Billy Boy (Rebar) has had an extra hard week (and so have we.) He has a respiratory infection (Pneumonia) and has been on oxygen since last Friday. He was supposed to have Botox shots in order to decrease the spasticity of the muscles in his arms, but that had to be cancelled due to the illness. He is in excrutiating pain and we give him muscle relaxers and valium, but sometimes even thats not enough. I'm also looking into Oxygen Hyperbaric Chambers (which I have read in Anoxia blogs) that it has helped with spasticity. We have five different visits next week, getting him into a car is a pain, so we will be needing a wheelchair van.

Monet is doing well, she is turning seven on Sunday. She too has her moments and misses her brother. We are all adjusting to the new Billy we have, while mourning the loss of the Billy we loved so much!