Wow, I cannot believe it’s August 15th already! Can you?! I think back about how this whole journey began on December 28th, and to think what all has happened in these (almost) 8 months is astounding.
Beckett had some great visitors again today. An old friend of mine from college, who is currently living in China, just so happened to be driving through Indy to the Airport and paid us a visit. I got to thinking, and realized I hadn’t seen this guy pretty much since graduation from undergrad (surprisingly, quite a little while ago now). He is now married with 2 beautiful little girls. We reminisced a little, and simply just caught up. It truly is inspiring to know we have prayers being said both domestic and international. I am humbled yet again.
Beckett had a decent day today. We had to do an ultrasound this morning in which he did “ok”. At times he just laid there, however, he definitely had some moments where he broke down pretty badly. We later received the results if that study to inform us that everything looks fine. That’s great news! Because as odd as this may sound, my initial thought was, “Good….as if he needs something else to be going ‘wrong’.” Please don’t judge me. 😉
HOWEVER, one of the residents then proceeded to try to explain to me that she feels the best thing to do right now is wait on the gj-tube, and maybe do that after we work through this portagin formula (a special formula that he HAS to be on right now, but is making him puke chunks in which he has been choking on). Again, please don’t judge me, but my first thought (in which I didn’t say out loud) was, “WHAT?!?!”. You see, the whole purpose of doing this ultrasound and possibly changing his g-tube to a gj-tube is to help him RIGHT NOW with throwing up such large chunks that he literally has and is choking….not just “cough cough”, but complete blocked air-way. Sooooooo, I mustered up all the politeness left in me and told her that the purpose of doing this gj-tube is to help him RIGHT NOW….not after he’s off this formula and back on something more normal.
(And just for further clarity, this new formula is non-negotiable right now because of that effusion he got which initially brought us back into the hospital. This new formula will help make sure that doesn’t come back. Soo, we have to work around it.)
Anyways…the conversation ended with her telling me that she can now see it from that/our perspective and will reconsider. We will talk about it again tomorrow to discuss what will be best for Beckett.
Well, I feel as if I should be apologizing for these updates because they are typed out with so much emotion…and sometime emotion doesn’t inspire thoughtfulness or mature responses. For that I apologize. I obviously do not apologize for how we are advocating for Beckett. Though we have no intentions to stir up strife, we will speak up on behalf of our son, and certainly try to do it in the most respectful manner possible. To be quite honest, the lady (the resident) I was speaking with today is very kind and we were able to talk it through well. Again, it just gets tiring sometimes when we feel like we are the ones thinking outside-the-box and/or repeating ourselves.
I’ll try to leave this on a lighter note…and I may have already shared this….but Beckett plays the best game of peek-a-boo! I lightly lay a blanket on his face in which he will rip it off with such zeal, it is sooo precious. And his cute little giggle helps add to the “adorable factor”. So awesome! He is such a good and cute little boy.
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
Sometimes there is just so many different people involved in caring for Beckett that you become repetitive and you have to stand up for and protect your son when a new face comes into the picture. I am sure you are doing an amazing job of being polite. Praying for more grace and patience for you as you deal with the every day. 🙂
You are doing what a parent should do, And you are doing such a great job. Don’t stop standing up for little Beckett, and don’t stop stepping in or asking questions. Beckett loves you.