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.