04/29/12 by Team Tyler | Updates | Comments Off on We can do hard things…
Tyler receiving blood and platelets - didn't feel too good 🙁
Almost two years ago, a sweet couple from Rexburg, whose parents went to school with me, lost their daughter in a tragic drowning accident. She was inspired and brave enough to document her experiences and feelings with the world – changing many, many lives along the way. You can read all about this amazing little family here. She took this unbelievably horrible trial and turned it into something that could help so many others, instead of becoming bitter and angry for the rest of her life. I didn’t know Ashley personally when I first heard about sweet Preslee and the accident, but followed her blog, as my daughter and friends did as well. When I read the entry that said Preslee had returned to her Heavenly Father, I cried most of the day. I have since met Ashley, and she is every bit as brave and inspiring in person as she is on her blog. She is my idol. Ashley’s motto “I can do hard things”, became my motto too. Funny enough, I thought some things in my life back then seemed hard, and her motto helped give me motivation to do things I didn’t want to because I thought they were too hard. Ashley and her friends made baskets for Primary Children’s Hospital, filled with blankets, toothbrushes, food items, and a little block of wood with the saying, “I can do hard things” on it. I was given this little block for Christmas and referred to it often. Little did I know what lay ahead for us…
After Ty was diagnosed, I really referred to it often. I kept one on my fridge and said it to myself every time I walked by it. The next Christmas, I was given a big frame with the words “We can do hard things” on it. It sits where the whole family can see it and be reminded of what we CAN do. I know with the help of the Savior, we ALL can do hard things. Because of His sacrifice for us, he knows how hard it is for us and is there to help us make it through.
Tyler ended up back in the hospital early Saturday morning after another round of vomiting blood – fourth admit this April. When we checked into the Emergency Room, his hematocrit level, which should be around 38 normally, was 17 – a very scary place to be. They didn’t waste much time at all getting him checked in and things started for a transfusion. Didn’t really even worry at first about the ‘whys’ until we got him stable. The GI doctor that morning said he needed ten units of blood and plasma. Saturday was spent transfusing him all day. Today is Sunday and he has been receiving blood most of the day today as well. They really feel like the ulcers just didn’t heal properly and his clotting factors weren’t great so he’s been on all sorts of drugs to help with that. They don’t feel the need to go in and scope and risk the possibility of doing more damage, thank heavens! Ty keeps reminding the doctors and nurses that he has a golf tournament coming up this Saturday that he is signed up for, so would they please get this taken care of before then! He actually golfed 9 holes on Wednesday (thanks Johnny, James, and David!), and 18 holes both Thursday and Friday before we ended up in here! The doctors can’t figure out how he had the strength to pick up his club, let alone golf for five hours three days in a row!
We are hoping to go home this evening (Sunday) once all the transfusions are done and he shows his levels are staying stable. Thank you to my sweet friends who mowed my yard, cleaned my house (ouch!), brought freezer meals, and helped get me ready for the conference I have this week. I feel so humbled and grateful to people who step in and save me before I go under…you are truly ones who ‘lift up the hands that hang down and strengthen the feeble knees’. Thank you will never be enough.
Remember, in my sweet friend Ashley’s words, “When you find yourself in a difficult situation remember the phrase, “I CAN DO HARD THINGS.” It’s possible . Life is hard, we just have to learn how to plow through it.” Thanks Ashley, for giving me strength and inspiration to be able to face this. I love you!
P.S. It’s Sunday evening, and we are home! I wrote this blog post this morning in the hospital – feeling every bit like I needed to share my motto. When we got home tonight, the doorbell rang, and there was a sweet family at my door, whom I had never met. They came to share their love and concern for Tyler, and brought a gift for our family – a beautifully framed picture that said, “I can do hard things”. I don’t think this is coincidental. Thank you sweet Armendariz Family! We are touched by your thoughtfullness. Thank you for listening!
I love this! Don't ever forget!
04/15/12 by Team Tyler | Updates | Comments Off on What a week…
These are the posts that are the hardest for me…trying to find the positive in a situation that hasn’t felt anything but painful. This past Wednesday, Tyler had had such a good day. He went to school for a few hours, went to lunch with me, and golfed with Darren. I made the HUGE mistake of saying to Darren as we were going to sleep, “Tyler hasn’t thrown up once today!” Lately he has had quite a bad time with the nausea and it has been a daily thing for him now. At one thirty in the morning, he yelled for me from the bathroom. When I went in there, he had been sick and it was not good…he had been vomiting up blood. He kept trying to convince me it was grape juice because he had taken his meds with grape juice earlier in the evening. In my heart I knew it wasn’t, but he kept insisting he knew what it was, so I just went out on the couch and laid by him for a while, trying to decide what to do. About two hours later, he was sick again, and I made sure he used a bucket instead of the toilet. This time there was no question what it was. I called my amazing friend, Kathy Merkley, who has not only been my good friend and exercise partner for 15 years, but also my “medical advisor” (she is a nurse practitioner at Primary Children’s). I woke her out of a dead sleep, and she ran over to check him. She had us head down and she called ahead so they were ready for us. When we got there, after taking labs and doing a few IVs (that was not fun), they got him into ultrasound, and then into an operating room to scope him and see where the bleeding was coming from. They told us it would take about thirty minutes.
Darren and I were already pretty upset about the whole thing, and trying to process what was going on. After almost two hours, we still had heard nothing. By then, we were really shaken. Finally, they called Darren in and told him by phone that Tyler was okay but had bleeding ulcers and they were getting them taken care of. Such a relief to know that he was still here and they knew what the problem was…
Tyler went into the PICU for about 24 hours, just to have someone monitor him and make sure he did not bleed internally. They took labs every 20 minutes for a while and watched his blood counts. They had three IV’s placed in him – two for meds and one ready in case he needed to be transfused quickly. It was really frightening to me – so many new things to worry about. I would have thought I had seen it all in the last year, but there are so many things about our bodies that can go wrong. What a miracle that so many things go right most of the time! I am so grateful for the doctors and nurses at PCMC for their care of Tyler (and Darren and me). I know that I have had my issues with them the past year, but they were so loving and attentive to Tyler – I am very grateful. I am also feeling so much gratitude for doctors who spend more time away from home than they should to help kids like Tyler – and for their willingness to learn about how bodies work and how to fix them. Because Tyler’s problems this time were GI-related, we had a GI team moreso than an oncology team following him. There were things about Tyler’s liver and GI issues I had never heard before and that were very enlightening. I got some training about his nausea and pain that I probably would not have gotten otherwise. I’m trying to think “tender mercy”, although it hasn’t felt very ‘tender’, or ‘merciful’, to be totally honest…
We are still here in the ICS (Immuno-Compromised Services) Unit waiting for Tyler to be able to tolerate food. He was allowed ice chips this afternoon, and tried a little food, but it’s not feeling so good for him. I think we’ll stay one more night, just to be safe, so we don’t end up running down here again in the middle of the night.
Once again, I’m trying to learn patience, and trying to find the purpose for Ty’s pain. It is literally tearing pieces of my heart out to watch him suffer. How I wish it was me in that bed instead of him. What does a mother tell her son when he asks when he’s going to feel better and that he’s getting tired of feeling sick all the time? He hardly ever says anything about all he has gone through…but I think being in this hospital is pretty much sheer torture for him. He would rather be home (like we all would), but I don’t think I dare take care of him there just yet!
So, while I sit here and watch him sleep, I think I’ll start searching talks again for something for us to grasp onto this time. General Conference talks this time were written just for me, I’m quite sure. So grateful that I can be fed that way. If you didn’t get a chance to listen, you should take the time now. The three talks that stood out to me the most were President Eyring’s, Elder Rasband’s, and Elder Scott’s. They touched such a chord in me, I knew they were a gift from Heavenly Father to me to help our family get through this.
It’s Sunday morning here in PCMC, and I think we’re going to finally go home!!! Thank you for your prayers and support of our family. I hope that I can be a support and help to so many who have been there for me when they have times of need.
Finally! We're going home!
