Hyrum had an appointment on Thursday, August 2nd. We learned that the end of his intestine is attached at the base of his bladder by his urethra. This is actually considered very high. The surgery will take about 3 hours and the Surgeon will cut him in front to unattach the intestine and using a laser to find the best place for his rectum, they will create his new hole. He will be in the hospital for 3-5 days.
The risks are high, but still the surgery must be done for him to lose his "pooping" bag. Because the end is so far away there is only a 10% chance success. The second risk is he has a main artery that the surgeon will be cutting close to that if cut he could bleed to death.
Hyrum also is very small for his age. He is barely in the 5th percentile. He barely fits in 3-6 mo clothes. The 0-3 are snug. But I figured that 4 months was enough to wear them and it was time to wear some other cute clothes. Most people are surprised when they find out he is 4 1/2 months old. Everybody thinks he is 6 weeks old. He is doing really good. We aren't sure when his next surgery will be, but will know by the end of the week. Hyrum eats every 3 hours day and night. He sleeps good at night (besides the eating) and not much during the day, so no complaints there.
Here is a picture of Hyrum talking on my Cell phone. He was actually gabbing away...it was really cute! My mom was on the other end and she loved it even more!
I try not to think about the negative aspects. There is nothing really I can do either way. The Surgeon is also very concerned for Hyrum and has consulted with other doctor's not only at Primary Children's Medical Center but other specialist across the U.S. I have a few nurses in our ward that work with him specifically and one that works in the NICU. When asked personally who they would choose each one says that this particular doctor is the best. We are confident in him and know that he is studying out the best possible way to perform this surgery. He has struggled in the past with Hyrum and he doesn't just jump in the "pool", but really knows what he is doing and takes full responsibility for his actions. These are two aspects that he has that gives him our full trust with Hyrum.
For these reasons, we are asking each of you to join with us in a day of fasting and prayer this upcoming Sunday, August 5th. We ask you to not only pray for Hyrum, but also for his surgeon that he will be guided in preparing for and performing this surgery.
August 4, 2007
The funny thing with Hyrum is if the surgery is successful and he gets to lose his bag, we are hoping he has my intestinal problems of being more constipated instead of John's problems of being to loose! Never thought I would hope one of my kids to be born with the tendency to be constipated!
I truly believe that God is no respecter of religion when you are praying...it is all about having the right heart and having faith that your prayers will be answered! That is our belief even in our religion. Thank you for calling your temple. I truly believe that the more prayers the better. We have other friends also that are not of our religion that we have invited to pray with us. I think that prayer is one thing that is common among every religion and ties us all together as human beings! So yes, God even hears my prayers and your prayers!
An Email from John's Aunt Kathy. It meant so much to us!
My view on faith and earth life is this: We are here to learn to trust God. Trust that the experiences we have can be for our good. Even when they stink. If we continue to follow and love Him, even when the "going gets tough"--as it is right now for you-- then we are making the Spiritual progress each of us needs to make during out term on earth. It is hard to keep that perspective. We get so caught up in earthly cares and in our own agendas.
When things get really rough--when we have a real chance to turn on Him and get grumpy at what He is doing--that is when we show whether we have learned the lesson of trusting Him or not.
I have done well in some of my tests. And I have failed miserably and gone through a serious process of repentance after some.
I am no judge--only Heavenly Father is--but it seems to me that you two are passing this one incredibly faithfully. However, I don't think "obedience and faith" necessarily gets us what we want. Many of our desires are righteous ones. But I have learned that Heavenly Father is not the Tooth Fairy. D & C 82:10 is for the after life. I always thought it meant this life.
We all want Hyrum to be healthy and normal and live a full life like your other children will.
"But if not" (see Daniel 3:16-18), that does not mean Heavenly Father does not love you or Hyrum or care about your heart. Abinadi was not saved from the flames while Shadrach, Meshach and Abednigo were. I think God loved Abinadi just as much.
The people Alma and Amulek converted were burned with their scriptures. Amulek begged Alma to stop it. Alma replied that those who die will be taken up into God's arms. But He allows bad things to happen to His children so we will know at the judgement bar that He is exercising righteous judgement.
If we are never tested, how can we know who/what we really are?
If your son makes it, hallelujah! If he is taken home, hallelujah! May God be with you and comfort you two. Love, Aunt Kathy
August 21, 2007
If the surgery is unsuccessful, than he will have a poop bag for the rest of his life. He can survive as normal as any...with a poop bag. They are very messy as you literally adhere the bag to his stomach and each time I replace it I have to remove the whole thing. Unfortunately he is very hot, so the bags this summer have not stuck on very well and they fall off. This makes a very big mess. We tend to go through lots of laundry. Also because his food is not fully processed it actually stains worse than regular poop. It is also more runny.
He also can not wear pants. He has to wear overalls because the bag would be in the way of pants and would cause problems.
I have a cousin with crones disease. He has had a bag for a few years. Socially it is difficult because you have no muscle to help with the release of stool or gas. So in a school setting, you would have the noise of gas and stool being made. As a teacher, I'm sure you understand the problem that would hold with the other kids.
But my mom has a neighbor who is 12 years old. She had cancer in her mother's womb. The cancer ate one leg and also most of her lower organs. She also has a bag, she finally was hooked up for her urin to be normal, but she has to wear a diaper because she has no muscle, thus no control. Though she is very self conscious about everything, she also has a great attitude. If Hyrum has his bag for the rest of his life, when he gets older I will get in contact with This young lady in hopes to help him not feel alone.
We are going through with the surgery because 10 % is better than nothing, which is what we have right now. And after the surgery is done we will know one way or another, what he will be facing for the rest of his life.
August 21, 2007
Another excerpt from a letter from Aunt Kathy (I didn't add it all for embarrassment to certain people she mentions)
I know miracles happen. And learning to handle such a severe challenge would make your son an amazingly humble and valiant young man. That, too, is a miracle. Our goal in this life before we came was to MAKE IT BACK HOME TO HEAVENLY FATHER--IN GOOD SPIRITUAL CONDITION. There are all kinds of disabilities. We are praying for Hyrum and his surgeon. It is in god's hands. Bless you all! Love Kathy
August 20, 2007
Hyrum's surgery has been put off.
Hyrum got sick with a cold about the 10th of this month. By this past Thursday (16th), the cold had turned into Bronchitis. Though Hyrum is feeling much better, Dr. Downey does not want to risk him getting more sick. And the ventilators for his airway can further disrupt his healing from the bronchitis. So his surgery has been put off until September 24th. We hope that will give him enough time to get fully recovered and he will be healthy enough at this time to have the surgery.
Thank you all for your prayers and support at this time. We hope everything in your own lives are well.
August 21, 2007
Yes that was one bonus of waiting is that I get some home "down time" before the surgery.
With the odds stacked against him, I think it is better to not add one more thing to the stack! I am glad they are holding off, today is the first day of school...so it was really bad timing! Karl will start preschool next week! He just had his 4th birthday. The haircut came because he and a friend were having "fun" with scissors! Oh well, he's a boy who looks good with a buzz!
I Am VERY excited that school started for my kids. They have gotten into more trouble in the last week than they have all summer.
Hyrum is better, his cough isn't so bad now, but they want to give his airway time to heal before they go and "knock" him up again.
As for the job situation, I am usually very involved, but this round I have not been able to. I know John is stressed, but so am I and it doesn't help either one. So we work toward relieving each others stress as best as we can, he doesn't complain about dinner and I encourage us to take walks. It has really helped him.
Though there is a chance he could die, no the 10 % chance is success of him walking "being carried" away with a new rectum. He could have the bag for the rest of his long life, but trust me...he really doesn't want to, it would be because he has no choice!
September 7, 2007
We have started school. It was nice to have Hyrum's surgery canceled. I had my entire house cleaned and laundry done so as to leave my house in order. So not having to go to surgery I actually got a lot of desired projects done. It lasted for about two days and then reality hit and it was time to clean and do laundry again...but it was great while it lasted. Since then Sarah has been to the Dr 3 times, once for an ear ache, and twice for a sprained wrist. She was trying to do a hand stand (something she has never done) on the neighbor’s trampoline...and she wonders why we don't have one...she of course landed wrong and the next day she was having x-rays. She also has hit her head on the monkey bars as she was swinging; she swung too hard and hit her head on the bar instead of catching it with her hand. Her poor teacher is wondering what's wrong that Sarah has to call me about every other day because this or that hurts and she needs to go to the Dr or needs some Ibuprofen for the pain. I have started to just laugh as there is nothing I can do.
Rachel is in 5th grade and for the first time since she started the adventure of schooling, she has a teacher she loves and relates to. Both John and I hated 5th grade, so we are glad that she will have a great year. She needs the boost of confidence that good teachers seem to be able to give out.
Karl started preschool. The first day he held my hand and was very shy about my leaving. The second day (preschool is MWF) I opened the door for him to get out and he asked if I was coming. I told him that he could go in by himself and I'd pick him up when he was done. He jumps out saying ok bye mom and runs to the door opens it and he hasn't had a problem going since.
Hyrum is up and down with his cold, he seems to not be able to completely recover, but he isn't wheezing anymore, so this is a good sign. He is starting to overall sleep for about 5 hours in one sitting and then 4 hours the next or vise versa either way I'm not as exhausted as I have been for the last many months.
In what little time I have to spare, I deep clean my house or sew. I have a knack for sewing like my mother and my sewing machine can produce the most coveted clothing. John's sister found out she was having a baby girl come Halloween and was very disappointed to find that my baby girl clothes are in Kentucky with my brother David, as David had two boys when I had my two girls and then he had two girls a bit before and after I had Karl, so we have swapped clothes until now as she is having her babies a bit closer together, so we have both had boys and so I divided the clothes back up so she can have hers back, but I still don't have any little girls clothes. So she has begged me to sew her up some frilly dresses!
September 11, 2007
Hyrum will be 6 months in two days. In some ways it seems to have gone so fast. In other ways I feel like I've been doing this forever. And that is just Hyrum.
Hyrum is doing much better, he is back to his typical congestion. I just hope to continue to keep him healthy. His surgery is still set for the 24th of this month. I'll keep you informed.
September 14, 2007
Hyrum has been sick and not sleeping at nights. He comes and goes with his cough. But overall he is doing much better. We have also learned that he sleeps much better when John runs his fan all night long. It is a box fan, I don't think any of the cold air hits Hyrum, so I think it is the noise that he likes. Either way tonight I'm putting on another blanket for myself to keep warm. Because of the lack of sleep I have a horrible sore throat today and my head is very congested. It is really hard when I'm trying to keep Hyrum healthy, but I'm the one sick and the only one home to take care of him.
September 17, 2007
Hyrum gave me the worst night ever the day before. He slept about 1 1/2 hours and was awake every 1/2 hour for his binky and then eating every 2 1/2 hours...it was exhausting...I stayed home from church and slept all day yesterday. I wish you could sleep up a "bank of rest" to make up for the future...For how much sleep I got during pregnancy, you'd think I could stay awake nonstop for a year!!! oh well:(
We are doing good. Hyrum is fighting a cough, I'm not sure if it is enough to keep him from surgery. It is planned for Monday. I make the kids wipe with anti-bacterial wipes everytime they come inside, they are not allowed to play with friends, and if they show any signs of illness, I make them were a mask! Everybody loves school including ME!!! (I don't actually go to school, but I love that everybody has something to do!!!!) All three are in gymnastics once a week and the girls take piano lessons once a week.
We are also trying to get ready to build a shed...I am the manuel labor in this deal...I have to level the spot it will go...I will probably be done by next spring which is what John is hoping for...But if it doesn't get done before the snow comes than HE is parking outside of the garage because there isn't enough room for his car.
In some ways I'm looking forward to a week in the hospital...it will give me a break from the other three kids. John was going to go to Virginia for a TCS conference, but we couldn't find a sitter for me to go with him, so we bagged it, since Hyrum wasn't doing very well anyways.
Well off to do more digging!!! HEHEHE
September 22, 2007
Hyrum's surgery is set for Monday morning. I have had to worry about it for a few months and am anxious to have it done...mostly because this is the deciding factor of what we will be up against for the rest of his life. If this surgery is successful than he will lose his colostomy bag in 3 months...if not he will always have his bag. The unknown, though, is very stressful. I think I can handle most anything, I just need to know what it is I'm handling!
September 23, 2007
I am just letting you know that Hyrum is still going into surgery tomorrow (Monday). The past month has flown by, but Hyrum has been pretty sick. For the first few weeks he suffered from Bronchitis and from there just a nasty cough and post nasal drip. He seems to be over the cough for the most part. I personally don't think that he will get any healthier in the next few months. For this past few weeks I have band my kids from playing at any body's house and nobody was allowed in my house that didn't belong. For the last week we have been using hand sanitizer like lotion and masks for anybody that exhibited sick like features.
Though maybe not tomorrow, I will send out an email when I can to let you know how the surgery went.
September 23, 2007An Email From my Uncle Ted
I wish Hyrum and your family the best as this day of surgery approaches and the risks will be better known after tomorrow. The intestines are so important to well being - especially the immunity system. You are right in the decision that Hyrum has reached a maximum in wellness with the condition of his body. Something needs to change in order for him to get better.
My thoughts will be with you tomorrow.
September 23, 2007
Ted
Thank you for your positive words...I don't think I could have voiced my own opinion any better.
I feel as prepared as I can be for not knowing the outcome. My neighbors are surprised that I am not a basket case, my response is that I don't have the time or the energy to fall apart, besides it doesn't do any body any good. I really am not nervous about tomorrow. I look at tomorrow as an answer to the question "How long will he have a colostomy bag?"...It could be as little as 3 months or the rest of his life. Either way he can and will have a fulfilling life.
He went today to have blood drawn...three different people and 6 pokes later, they finally got it done. His veins have yet to recover from the first 6 weeks of his life, so his veins are very tiny.
I will keep you updated on how it has gone.
