Monday, April 30, 2018

Last week's whirlwind...

I believe this post is well overdue and I have the time to write it as I (David) am sitting in the hospital with Andrew (at least, I began this post while in the hospital with Andrew last week).  On Sunday and Monday last week, Andrew had been rather lethargic and woozy. On Sunday, Andrew woke up in terrible stomach pain, so we gave him his pain medicine and then let him fall back asleep. He slept from 8:00 am - 4:00 pm. We woke him up to take him with us to Life Group at church, but right when we got home he was ready for bed again (he was asleep by 8:30 pm). On Monday, Andrew woke up to go to school and was really tired, but he is always really tired before school, so that wasn’t out of the ordinary. We received a call from the school nurse at 9:30 am when Andrew went to get his medicine and she stated that he was extremely tired and acting a little different. We picked him up and took him to the pediatrician and she tested him for strep and commented as well on how different he was acting. She also took his pulse ox, which was around 91-92% and then the nurse came in to confirm that he was very positive for strep. The doctor stated she would like Andrew to go to Texas Children’s Hospital for the doctors to due some lab work and imaging. She was so concerned with how he looked that she called the ambulance to transport him.

This is how Andrew spent ALL day Sunday!


We got to TCH and Andrew got to go through FastPass to get a bed in the ER (one of the few bonuses to having a kid with a major illness... we have two kids that get fast passed in the ER). He gets poked a couple times before they land the IV (they ended up having to call the VAT team to place the line.... thats the team they call when they can't get a line started), has a head CT completed, and then a chest X-ray.  They were concerned with how lethargic he was, but based on lab results and head CT, they were prepared to send him home and let him ride it out at home, which would have been fine by us. However, after they shared that they would get paperwork ready to discharge, they then returned to state his chest X-ray came back and Andrew had a severe case of pneumonia, which is crazy because he wasn’t showing any major signs of pneumonia (other than being lethargic).  Kristi had given me specific instructions as to what she wanted them to test for and 2 out of her 3 main concerns were done automatically (I didn't even need to request it), but they didn't see a need for the third thing which was a chest x-ray at the time because he didn't have any pneumonia like symptoms (Kristi just had a gut feeling thats what it was), however when I expressed concern about his lower than normal oxygen levels they agreed a chest x-ray made sense just to be safe.  Due to Andrew's extreme exhaustion the docs thought it would make a little more sense to keep him overnight and monitor him a little more. For the 32 hours we were in the hospital, Andrew probably slept for about 27 hours; he was really only awake consistently for the last four hours of us being at the hospital.  While there, when he would wake up, he struggled to keep his eyes open, might watch 15 minutes of a movie and eat a few bites of food, then zonked out again.  During the night the doctors would wake him up to ask him some questions (since they had him on neurological monitoring due to his lethargy and odd behaviors), he usually got them right, but on one occasion none of us could wake Andrew up and after about five minutes of trying really hard, the doctor had to give him a pretty aggressive chest rub with his knuckles and Andrew finally said, "huh."  When the doctor asked him who I was, Andrew said, "Mr. Incredible" with an attitude that was like, you should know that.  Andrew also said that it was 2008. When the doctors clarified the year, he corrected himself and said it was 2007.  His behaviors and inability to rouse were so concerning to the doctors that they were planning on ordering an MRI of his head in the morning because they were concerned that his cancer had spread to the brain. Thankfully, Andrew woke up in late morning that day and was able to respond much better than he had the night before, although still falling asleep while the doctor was talking to him and while he was trying to put some eggs and bacon in his mouth (if you have ever seen those videos of babies falling asleep while eating, that was Andrew).  The doctor wasn't completely sold yet, but still not ready to order an MRI.  Kristi got Abigail out of school early and they came to visit us in the hospital and Andrew perked right up when Abigail got there.  He stayed awake the rest of his time at the hospital, so when the doctor came back in to check on him she was rather relieved with how he looked and was communicating, so she put in the orders for discharge.  I guess Andrew just needed his best friend/sister there with him.  Who would've thought that we would be so relieved for the diagnosis to be a severe case of pneumonia and strep throat.  Thank you to everyone who has stepped in to help in some way, offered to help, and prayed for our family. Your thoughts and care for us means the world to us and we are extremely grateful!

Getting admitted...

Sissy to the rescue... proving he is ready to be discharged.  This experience was great evidence of the power of presence.  Sometimes just being there is enough!


It has been so long since we last updated the blog, I hardly would expect y'all to read a lengthy explanation of all the stuff we could write about; therefore, I will give some brief descriptions with pictures.  (Plus, that gives me the excuse to not need to write a lot.  I leave that to Kristi)!

It is rather difficult to remember past last week, so I am having to go through pictures on the computer to remember what we have been up to; therefore, I am also going to post things in order from most recent to further in the past.

-Abby has continued to play A TON of soccer because she really just can't get enough of it!  Such a treat that Pastor Joe and Mindi came out to cheer Abby on during one of her 3 games this weekend!

-Grace had kindergarten round-up for Campbell Elementary last Friday.  We can't believe she will be starting kindergarten in the Fall!  She was so excited to go to bubba and sissy's school and that she was able to see some friends from her current PPCD class there, along with some neighbors.  She walked off to the classrooms without us (while they went over details for parents) and had no issues whatsoever.  We are so excited for next year and thankful for all of the teachers, therapists, and aides who have invested so much in our little girl over the past four years of school!



-Two Saturdays ago, the school my sister (Becca) teaches at in The Woodlands was having a 5k run in support of pediatric cancer, so Andrew was asked to be one of the kids cutting the ribbon before the race.  He had a lot of fun being able to participate in that event, but I think Grace might have enjoyed the festivities even more.  After the race began, we walked to one of the water stations where my nephew, Joe, was handing out water and we sat down there for a moment.  As each runner passed, Grace cheered for them at the top of her lungs.  Some of the runners had their dogs running with them as well, so Grace would also cheer, "Good job, doggy!  You're so cute!"  As the runners would drink water and then throw their cup on the floor, Grace was a little confused.  She got a cup of water from Joe, drank it, and then chucked it onto the sidewalk just like all the runners were doing.  My description doesn't sound that funny, but I assure you it was hilarious.

Grace just couldn't resist, she wanted to race too!



Andrew loves German Shepard's, so he had to get a pic with this pup



-Abigail and I got to go on a daddy/daughter date with a 50's sock/hop theme at our church three Saturdays ago (it was sponsored by the college kids/young adult group, in order for them to raise money to go to an orphanage down in Mexico that our church has a relationship with).  It was so much fun taking her on a date!  So much of the individual time I get with Abby is on the long car rides going to and from soccer, so it was a pleasure to have alone time with her.  I praise God for the young woman she is growing into and for the constant transformation taking place in her life.  I know everyone loves their kids, so it isn't like I am claiming that I have it better than anyone, but I am stating that I do feel extremely blessed and grateful that Abigail is mine!  I make a lot of stupid decisions in life, but I think the best decision Kristi and I ever made is choosing for me to quit working when Abigail was born, so that I was able to stay home and really help raise her (as well as Andrew and Grace... but Abigail was the first).



-On the same day that Abigail and I had the father/daughter dance, that morning Kristi took Andrew to a superhero party put on by Sunshine Kids (a local organization supporting pediatric cancer patients and their families).  Andrew loves all the Marvel and DC superheroes, so he had a blast at this event.  He made some crafts, took pictures with superheroes (which includes Kristi, since she's pretty super as well), had a caricature drawn of them, and enjoyed just having some alone time with Kristi!





-The big kids got to go to an Astros game with their besties, Mrs. Kathy and Mr. Alan!


***This is Kristi with a quick prayer request :-)- Andrew's pain has been very well controlled since his last treatment in early March, which almost feels eerie in many ways because we have never gone this long without break through pain.  I literally can't stop praising the Lord for this break in pain and at the same time I'm fighting the temptation to live in a place of fear, anticipating the arrival of the REALLY bad pain that typically shows up with a vengeance after the honeymoon phase (temporary relief in pain that typically lasts a few weeks) post treatment ends.  God can absolutely keep that pain away and not allow the honeymoon phase to end (even though it feels unlikely because his pain has been so difficult to control and always a moving and disappointing target), so I'm holding on to hope that this relief in pain is evidence of PRRT working, that the pain would stay away, and that we would be able to get our sweet boy off of some of these crazy pain meds.  This feels like a giant, sort of crazy prayer request, but I'm going to ask you to please join us in praying for these requests because I know that our God is able!

Andrew's shirt says it all...  "you can't stop awesome" and boy is our God AWESOME!!!


I know we say it often (but it never feels like we say it enough), we really do appreciate all of you and are grateful for your willingness to walk through this journey with us.  God knew we wouldn't be able to do this without all of your support and encouragement, so I am thankful for His wisdom and provision through each of you!

This is Emme smiling, she appreciates it as well!



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