My best trip to the hospital report

[007]

I'm so glad your daughter is making progress. Your love and commitment to her is obvious and touching.

Just one thought/suggestion...drugs can work miracles and they can also create nightmares. Do your own extensive research on the drugs the doctors are prescribing for your daughter. There is so much info on the internet...some good, some bad...but educate/inform yourself the best you can. Obviously, I don't know your physician and if your daughter is improving that's wonderful. But the long term effects of some drugs and their combinations can be devastating. The orientation of many physicians is "drugs, drugs, drugs" and then more drugs to counteract undesirable side effects.
I'm sure I'm not saying anything you're not aware of...but the pics of your little girl prompted me to make these comments.

That is very important advise, I completely agree and thank you for bringing it up. Nearly everything has some side effect, its just a matter of whether it has been discovered and published. Due to the complexity of medicine its nearly impossible to quantify the effects in many cases, so the risk to benefit ratio can be misleading.

My daughter has received excellent care at Primary childrens in Salt Lake, but locally they try to mold her into what they feel a patient should be, which is a short visit, no research, throw drugs at it, and repeat. Works for their billing department but not for her.

I've noticed a major difference in providers that are involved with research universities, the care, compassion and team work is beyond what I thought humanly possible.

The providers that team only with drug companies have an entirely different ethic, and I can't believe what they do to peoples lives.

[thebrassnuckles]

You are a hero.

I couldnt imagine my daughter being that ill..


Keep on keepin on.

[DrMoab]

Obviously being in Utah we hear a lot about Primary Children's but it doesn't surprise me that they found out a great deal more than your normal doctor. They are world renown in their amazing ability to find answers that nobody else can.

Is she going to be treated there? If so or if you plan on spending a lot of time in Utah, speak up. There are plenty of us here who would be more than willing to help out in anyway we can. Even if it's just an ear to talk to while things are going down.

Good luck and great story!

[blazinid]

Thank you for sharing this story. I tend to forget how lucky I am to have two healthy young girls that keep me on my toes. You have inspired me to spend more quality time with them before they "outgrow" there old man.

[Mr. D]

I am happy that things are improving for your little angel, thoughts and prayers are being sent her way.

[cowboy63645]

I have gone through something similar in nature, and know the pain and agony that you go through as a parent, watching your child have to go through things that they should not be going through at a young age. When my daughter was born, she was in all legal rights, dead. At 10 days old, she had her first open heart surgery, and only has one kidney. We were not sure if she was going to make it. As it was my first child, I was mortified, had no lue as to wether I should be mad at the world or happy that she is still alive.

Now, at the age of 4, and 3 open heart surgeries later, my daughter is healthy, and looks and acts like your average 4 year old little girl. Aside from the scars on her chest from tubes, and oxygen and the heart surgery itself, you would never tell by looking at her that she was ever sick. We named her Faith, to remind us that in all things that we do, day in and day out, that we have a beautiful baby girl who has a loving family, lots of support, and that with a little faith, in yourself, in the doctor's, and in the treatment, and most importnantly in the big guy upstairs, you will make it through whatever is thrown at you.

If you ever need anything, please dont hesitate to ask. I am a good listener and a great talker lol. I wish your daughter the absolute best with everything she is going through and the family and I will say an extra prayer every night!

[007]

Thanks for all the sincere comments!

Cowboy, I feel your pain...and your joy Faith must be a warrior to have pulled through that! It sure makes you proud of her!

[SOAZ]

Thanks for the nice words! I was hesitant to post a family matter type tear jerker, but I hoped it would illustrate how important it is to share the real world with your family.

There are two things nobody can print or make more of; Time and Land. Therefore, the richest thing a person can do is spend time with the land.

I'm really greatfull for the folks here that do that, and inspire others to do the same.

If my daughter had to grow up mainstream with a bunch of barbie types, her gimped arm and scars would hold her down. Instead she may learn what the world really is and the real nature of beauty

Thanks for posting this. ONE of the many things I love about my partner in life is that she realizes this and helps remind me of it.
Planning for the future is great, but it must be done in conjunction with living now. Too many people say, "I'll do this or that when I retire." We have to do things and spend time with the ones we love NOW too!
And there is no better place to do it than in nature. Get out and see some land. It's got more stations than any TV.
I hope all of your daughters challenges are overcome and that they help her build great character.

[Streakerfreak]

Oh wow. Just discovered this thread today. I wish you and your daughter the best of luck.

[007]

Oh wow. Just discovered this thread today. I wish you and your daughter the best of luck.

I hope things are going great. Do you have an update. What a great father!

Thanks guys,

Here is an update:

Right after Christmas we went on a 9 day trip to Death valley, she had been sick right up to this point, (went to the ER on Christmas day )so I was very hesitant to take her, but a friend and fellow portal member (wardrow) offered to come along and offer his help. With him being a paramedic and his wife being a doctor, I felt comfortable that we could get her out and boost her spirits.

It was tough managing a trip and various medications, but with a fridge to keep her medication fresh and a gps telling us where the local ER or pharmacy was it all worked out great. At one point I received cell coverage in DV and was informed by her doctor that the antibiotic he prescribed was wrong and that we had to get it changed out. That led to a trip into Las Vegas and a detour over to the Grand canyon where we encountered over a foot of snow and subzero temps! I was a little stressed when our propane heater refused to operate because of the altitude, but I had an electric blanket and fur coats to keep my girl warm for a while. We were about 60 miles from the nearest plowed road and I was worried we might get snowed in for a while. It was fine and we left the next day.

Lexie was very healthy during the trip and had a blast, (swimming in a warm spring and eating lobster off the tailgate is hard to beat) but a few days after getting back she starting getting sick again. I took her into the hospital again and they pumped her back up on antibiotics but it didn't seem to be getting her any better so I b-lined it down to Salt lake. It happened to be during a horrible blizzard but thankfully my truck was well prepared for the task. About three hours out of Salt Lake she was getting really sick and I almost pulled into the ER in Idaho Falls but I called my Aunt who is a nurse, and she said keep going GET TO SALT LAKE - so I did. Primary childrens admitted her for a week and her health has been restored!

I can't emphasize enough how great that hospital is. My daughter had more than 6 doctor's working on her to find out the problem. They care about kids, not just seeing 20-30 patients per day and the revenue stream that follows. The hospital where we live is actually a larger and nicer facility, but it is amazingly understaffed and ran by a business man, not somebody interested in patient care.

So anyway, Lexie is doing great and she will be back in Salt Lake soon for a surgery to prevent any more kidney infections, and then after recovery she will be back for heart surgery. After that she will be 100% and off medication.

She keeps asking when the next trip will be and I'm not sure, but it will be as soon as she is ready. A month in Baja later in the year is already in the works

Thanks for the responses, It means a lot for me to be able to share this situation with like minded folks. The stress can be overwhelming and it helps to hear from people that have endured it or can offer support.

I'd like to thank Wardrow for going on the last trip. Knowing I had an extra vehicle with a paramedic allowed for a wonderful experience that wouldn't have happened otherwise. Thanks Again Wardrow!