What a week…

15 April 2012

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!


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