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Friday, July 16, 2010

418 Hours

In the last 19 days Austin has...
  • 418 hours on dialysis, and it's starting to work.
  • Pediatric Intensive Care for 18 days.
  • Held for the first time in 16 days yesterday.
  • Received 6 blood transfusions (a lot for a little guy his size)
  • Has 6 drips for medication/IV, he was up to 10. Now he can take some orally.
  • Walked for the first time in 19 days today.
So here we are. We have officially turned the corner, and Austin is taking leaps and bounds toward recovery. He is peeing, yesterday he peed 25cc's, and the Dr is very pleased. We went outside and played next to a big fountain today during physical therapy, and he took his first wagon ride. He loves to squirt water form a syringe at everyone, especially the nurses. He can be quiet fun. He can also have hard times. It is really hard to have to be the bad guy and make him do his Physical Therapy, and take his oral medication, and hold onto him when they have to give him a spit bath (which he does not like), or hook him up to stuff. But in the end it is to reach our goal: going home. No matter what is going on, I have already told myself that I will be okay with it as long as we get to take our little boy home.
We are continuously blessed, from Ben's work, to the support of our family and friends. It is really neat how some of these blessings have been coming to be after years of what seems like thoughtful planning of a truly thoughtful and loving Heavenly Father. I can only describe some of the moments I have experienced as soul expanding, and have grown closer to my Father.
Ben is starting a new job on Monday, working for Boston Scientific. It was a hard choice to leave Amgen. Ben accepted the offer right at the start of our vacation. When all of hospital stuff started to happen Amgen did offer to take Ben back. But in the long run we think that this new job will be better for our family. We will be moving about an hour north of where we currently live to Valencia/Santa Clarita area some time in the future, we are hoping to move before we bring Austin and Emma down but we will have to see.
This has been a perspective changing experience so far, bringing really important things sharply into focus. I love my family, and am very grateful to be with them for all eternity. I am grateful for a loving Heavenly Father that provides us with everything, including our beautiful and wonderful children. I know that He has a plan for me, and that when I try to heed to that plan I am happier. I know that having a grateful heart is truly a treasure to behold bringing happiness and peace a long the way. I know that I am loved, and am grateful for it. I am grateful and appreciative of learning opportunities (not that I wouldn't give this all back to not have my little guy sick!). I am grateful for the gospel and the peace it brings. I know these things to be true.

Wednesday, July 7, 2010

I Can Do Hard Things

My friend Samantha Miller and I have a common saying, "I can do hard things". We remind each other of this as we experience our different challenges, we say, "Remember, you can do hard things!". I was reminded of this as I was on the phone with her yesterday. Austin, Emma, Ben, and I are going to do this, we can do this, all because of the love and care from Heavenly Father. We have been incredibly blessed, Heavenly Father knew this was going to happen, but he had this terrible thing happen in the best way possible. Here are just a few of our blessings.
  • Family. If this would have happened in California, it would be a disaster. Here Emma is consistently taken care of by one of two people, and between Ben's family and my family, we always have the support of someone here at the hospital with us. We have had constant prayers, and support from our families. They lift us up when it gets hard.
  • Friends. All of our friends have a encouraging words to say, and we have had many concerned phone calls, and many of them gave blood. They also spread the word about donating to the blood bank and encouraged everyone to pray for us. They help us out, and give us love. We appreciate them.
  • We are staying with the parents of one of Ben's friends Analee Byers. He met her at WSU and kept in contact with her over the years. Analee is in Australia at the moment, but she reached out to Ben and found a place for us to stay. Her family is amazing, and are very generous hosts. Her dad is a pediatrician to boot.
  • Ben was already on vacation, so it was planned that he would be away from his job for an extended amount of time. Also Amgen was shut down for apart of this time. Ben is also in the process of changing jobs to work for Boston Scientific, with the bump in salary we will be able to better pay our medical bills. It might be hard for him to switch jobs right now but he is going to fly up on the weekends, and in the end it's a blessing.
  • Our awesome Nephrologist, Dr. Hernandez, is wonderful and everyone tells us that if they were in our position they would want him as their Dr. He also trained at UCLA for his specialty, so when we finally go home, he will hand our case to someone he knows and trusts for follow up care.
  • Spokane Children's Hospital is a great place. The Pediatric Intensive Care Unit isn't huge, and some of the nurses have been here for over 20 years (which is unheard of) since they like working here so much. We also see our Dr at least once everyday. This is unusual, and we are grateful for his attentiveness. If we were in Seattle we would be attended to by Fellows that would report to a Dr, here we get the real deal. Also we have a nurse in our room 24 hours a day to monitor the dialysis.
  • Ben works for a company that has a Nephrology division with nationally recognized Dr's in the field. If we really needed help we can use them as a resource. We also have our good friend Kareem's mom, who just happens to be a very good and experienced Nephrologist. We talk to her on the phone, and she likes to keep up with his progress.
  • Emma had diarrhea before Austin had E. Coli. I personally think that this is why she did not get as sick, I think the E. Coli passed right through her system. I might be wrong, but one things for sure. We are so blessed that she did not have it, even though she exhibited most of the same symptoms.
  • We were able to see Dr Milligan in Moses Lake who pointed us to Spokane, and we arrived here before he went into renal failure, which better his chances. Austin was not a patient of Dr. Milligan, but we knew him from Ben's parents ward. We couldn't get through to him earlier, and he had been on vacation the week before. I sat in the waiting room and when I saw him I flagged him down through the window. His timing was perfect as far as getting back into town, seeing us that same day, and sending us to Spokane Children's when he did.
  • Every other person that goes to the blood bank in Moses Lake donates in Austin's name, and is blowing the other blood banks out of the water as far as numbers go. His story was even on the local radio station there. My dad was at the blood bank and was talking to a lady that informed him she had never given blood, but when she heard Austin's story she tearfully said "I just had to come down here and donate blood for that little boy!". We are touched that so many people have done this for our Austin and that many people will be helped because of him. It's paying forward for all the people that donated for Austin to have blood.
  • Our friends Eric and Tracy Fuhriman came to visit us. They had the very difficult experience of having their beautiful little boy Kimball pass away after he was born with genetic/heart problems. They stayed at the hospital with him, and it was a very tough experience. We were able to have good talks, and they understood what we were experiencing so well. We appreciate them so much for helping us with their hard earned wisdom, taking us out on the town for a break, and the thoughtful goodies they brought us.
There are many more, and everyday I realize another blessing to add to the long list of things that could only have been arranged by a very thoughtful and loving Heavenly Father. He loves us and loves Austin more than we ever could. We are so grateful for Him and the care he is taking of our little family.

Monday, July 5, 2010

Some History

So here is the history of the illness, sorry if it boring.
June
  • 22, Tues Emma starts to get sick with diarrhea.
  • 23, Wed Emma is still sick, a slight fever. We left for camping in my parents RV. Had hamburgers and went swimming in the lake. We thought it would be fine since it was air conditioned. Pick up Ben from Spokane Airport at 1 am.
  • 24, Thurs. Camping at Clear Lake by Spokane, Emma still sick, getting worse, trouble sleeping, abdominal pain. We leave in the morning to take Emma back to Moses Lake. Austin seems warm, but exhibits no other symptoms, and seems otherwise happy. We leave him with our family. They leave a couple hours after us. We call Dr. Milligan's office (a Dr in Ben's parents ward, that I have been seen by before) for Emma but he is on vacation. Now Austin seems really warm when he gets home, and has a fever of 100.3. We can't decide if this is from being out in the sun too much, or something other, so we let him sleep.
  • 25, Friday Austin and Emma did not sleep well. Austin started throwing up, shivering and his lips, legs, and arms started turning blue. Rushed him to the ER. Gave fluids, took blood. Found nothing conclusive, so they sent us home. Emma and Austin both now have severe abdominal cramps and will not sleep more than 20 minutes at a time, waking screaming in pain, then poop and go back to sleep. We are changing them every 20 minutes or so.
  • 26, Saturday, Austin and Emma still can't sleep. Emma is very lethargic. We take her to the ER to get fluids, and they run labs on her. The Dr informs me it could be up to two weeks before we get and results on the stool sample, tells us there is nothing they can do, and send us home. Austin continues to throw up, including the dissolve-able anti-nausea medication Zofran. We call Children Hospital in Seattle to ask if their labs are faster and consider driving over, eventually we get a hold of the lab in Moses Lake that informs us the Dr. was misinformed and the labs should get back to us on Monday. Since the kids were around farm animals it could be parasitic. We decide if the labs are inconclusive we plan on going to Children's Hospital in Spokane. In the evening Emma is feeling better and eating a little something. Austin is still sick, but now consistently has small steaks blood in his stools. The ER Dr will not take our calls, and they say we have to bring him in again. We speak to our pediatrician in Ca and he agrees to our plan to take him to Children's hospital. We are confused about what to do since the ER Dr said there was nothing they could do for him, and his labs had been clear earlier.
  • 27, Sunday, Austin's symptoms have not changed, but that the amount of blood is growing. Emma is getting better and better. We are hoping since Austin appears to be two days behind his sister in symptoms that he will hopefully feel better soon.
  • 28, Trying to decide what to do, we try to get a hold of Dr Milligan, but can't get through to him. We try and take Austin to the walk-in clinic to hydrate him while we wait for the lab to call us for the test results. Since the walk-in clinic is in the same building as Dr Milligan I (Cortney) stand in front of his office and through half drawn blinds flag him down, he comes out and we make an appointment for 1:30. At the appointment they give him an IV, and have a CT scan done. It looks like it might be appendicitis, so they call ahead and we drive to Spokane Children's. They say that he is really sick but it is not appendicitis, and they run tests, they think it might be HUS, among other things. He starts asking for water, but under Dr's orders he can't have any. We are admitted to the hospital, and told we will have to be there for 3 or 4 days.
  • 29, Tuesday. We are told he has HUS, and are introduced to Dr. Hernandez, a pediatric Nephrologist. He explains the HUS to us, and explains that his kidney's are shutting down. Austin is still in pain, and they give him some pain medication that let him sleep for the first time in 4 days. He is officially diagnosed with aggressive strain of E. Coli 0157. Emma's test is confirmed negative for E. Coli, we are still watching her, running labs at Dr. Milligan's office.
  • 30, Wednesday, Austin goes on dialysis, and receives a blood transfusion.
July
  • 1, Thursday, Austin is making progress, he can drink an ounce every three hours, and he is more alert. Also his stools are improving, little to no blood, so the E. Coli is working through his system. He also responds to us more and more. It is truly a blessing.
  • 2, Austin is having better and bigger poop, that is good because it is the only way for body to flush out the E. Coli. He is in more pain though today from the abdominal cramps (think of having the worst diarrhea cramps a couple times an hour for a week=not fun). Our Dr said the HUS is slowing down (good), but his white blood cell count is up, so that might be a sign of infection in his blood.
  • 3, Austin's blood culture was negative, which is good. We backed off the pain meds because they slow his gut, but he is in a lot more pain. He also can't have very much water and that is all he wants (and juice). So between that and the cramps we feel pretty helpless, it is sad, but we have to buck up and be strong for our little man. His story was on the radio in Moses Lake to encourage people to donate blood. Every other person that goes into the clinic donates blood in Austin's name. The CEO of Samaritan Hospital calls for permission to have a blood drive in Austin's name. Here is what we put on Facebook: Our dear friends and family, thank you for your love and support. All blood types are welcome so please encourage everyone who can to donate blood to an Inland Northwest Blood Center (http://www.inbc2.org/) in Austin's name (and address, see comments). Again, all blood types are welcome. This will offset the cost of the blood we get and pay it forward for the blood we are using. Please see link for locations. This is the most helpful thing you can do, other than pray for us.
  • 4, Sunday, Hundreds of people fasted and prayed for Austin. His white blood cell count is down, but he slept last night. They put the pic line in so we have another spot for blood transfusions. Austin is doing well. He did have to get a blood transfusion, but his numbers are holding surprisingly well, and they said he is in the clear as far as not having an infection. We are so grateful to Heavenly Father who listens to our prayers, and blesses us with continuous little victories.
  • 5, Monday, Our Dr said that Austin's red blood cells rupturing will peak in a couple of days (so it has to get a little worse before it get's better) but when that happens he will hopefully get the E. Coli through his system. Other than that he is holding down the Pedialite and the Dr was asking what his favorite foods are. Tomorrow he might get some jello. I am trying not to get too excited just in case it doesn't happen or something else happens, but I am so grateful that we are so blessed. Heavenly Father listens to prayers, and loves us.
Sorry this post is so long, and some of this is repeated on Facebook, but I plan on scrap booking this. I will be truthful that this has been the hardest thing that either Ben and I have been through. We appreciate all of your prayers, and good thoughts. Thank you!