So, it’s Wednesday and we are still in Wilmington. I hope everyone had a great Labor Day. Trey went home on Sunday to take care of some things but more importantly to be with Emily. She started her freshman year at a new school Tuesday and you guys know the butterflies that come with that. Plus she is 14, and to top it off, having your big brother critically ill in the hospital and he and your mom in another state doesn’t help. I really must give props to this girl. She has really stepped up in this situation and the way she has helped us and the thoughtful things she has done, I am truly, truly, truly blessed to have such a wonderful daughter. We will have our moments, and she will have her moments, but we will get through it as a family. To quote the great and wise Sister Sledge ” We are Fam-il-ly”. Or what that the Pointer Sisters? No, I am pretty sure it was Sister Sledge.
We had a setback Monday night and it was pretty significant. I think I told you guys that Tyler was on a broad range antibiotic. Well, he still developed an infection in spite of that antibiotic. From talking to the infectious disease doctors it turns out that that particular antibiotic can grow resistant pretty quickly to the particular infection he has. So, bottom line, it was not as effective as they hoped it would be. The good news is that they have identified the strain and have the correct antibiotic to fight it. We started that drug yesterday and they want to give it a good 24 to 48 hours. Plus they have him on a different broad antibiotic.
Along with the infection situation they discovered Monday night that his oxygen levels had started to decrease and noticed with a chest film that his lower lung had started to close. At this time things became super, super, critical. His doctor got on the phone with colleagues, Tyler’s other doctors here, and the ECMO people from Duke. In the end they decided to try a machine that is usually used in the NICU. It hooks up to his ventilator and puts Nitric Oxcide into his lungs (not to be confused with Nitrix oxide ie. laughing gas. Although I would give a million dollars to see and hear him laugh right now). Thankfully that worked almost immediately. Que the band……ba da da!!!! Enter breakdown #2. After about 10 minutes of non stop, shoulder shaking, snot dripping, crying I was physically and mentally done fried. I have never felt so heavy, it took effort to hold a stryophone cup that was almost empty and resting on the rail of the bed. I don’t think I could have moved if I tried. That night was rough. Rough, Rough, Rough.
But with those dips that are agonizing and horrible come the upswings. The fact that he is stable, the fact that they continue to be able to get so much fluid off, each dial of the machine knobs that go down….One step back, two steps forward….Slow and steady. Tortuous and the Hare. Put that purple eyeliner on and start another day..
They did another bronk today and the doctor was able to get out some more “plugs”. This is the stuff that is blocking his lungs preventing the oxygen and blood from getting to where it needs to be and start healing. His doctor let me have a front row seat to “Lung TV” and it was some crazy, crazy stuff. Dr. P (I am not going to give you his name because he is currently a member of the outstanding team representing #Team Tyler and will be currently unavailable until further notice, so you can’t have him (sticking my tongue out) Woops, let me go back and explain. The Bronk-a-konk-ulous (another medical term, like Gunga. Most medical professionals just shorten it to “Bronk” because “Bronk-a-konk-ulous” is such a long term for them. Poor guys 🙂 just kidding) So, anyway, Dr. P goes down with a small camera to take a look at Tyler’s lungs and the whole thing is saved onto a DVD that will soon be available for all you to rent on Redbox. No more boring Friday nights!
Normal lungs are a nice pretty salmon color. Both of Tyler’s lungs are white with bits of angry red and so damaged there is no pink in sight. The goal is to get that blood and oxygen flowing in them so they can heal. And the whole healing process I am told, can be months or maybe even years. But that will be another bridge we will cross when we need to. Because of Monday’s set back we had to go back to the higher settings on the machines, but as of right now slowly creeping back down and are almost back to where we started. So that is great news. I am not kidding when I say this, but he is on a dose of Fentanyl that could knock over an Elephant.
Not even kidding. They need to keep him sedated AND his body is metabolizing the drug very fast so they are working on bringing that the fentanyl down and introducing another medication so his body doesn’t develop a tolerance for it. So that’s where we are right now. Please keep those thoughts and prayers coming. We are in in a little bubble here, and I keep hearing little snippits of people in the “outside world” praying for him and keeping him in their thoughts and prayers. I am so very thankful for those of you.
Have I told you about the nurses and doctors for #Team Tyler? A-MAZ-ING!!!! I just got done stuffing my belly with a wonderful potluck they put together. Chicken, sandwiches, Thai food, noodle salad, a kale salad that didn’t taste healthy (but probably was, but it was yummy so I won’t hold the fact that it was healthy against it), buffalo chicken dip which accidental landed on my plate 3 or 4 times, fruit……. it was all so delish, and thoughtful. Not to mention the pasta and cake the other night from the “mean” nurse who has a reputation to uphold and forgets her heart is bigger than this hospital. If you guys are reading this, I don’t think I can every repay you for everything that each of you AND your family’s have done for us. For everything I see you do, I know there are even more behind the sceen things I am not aware of. So I want you to know that you are valuable, appreciated, and are truly special and remarkable people with extraordinary gifts, talents, and enormous hearts. Thank you.
Until next time,
Keep those thoughts, prayers and good vibes coming. They helped get us through another crisis and continue guide and push us forward.
I told Tyler that Pink is our new favorite color for awhile, Pink Lungs. (note to Crayola: New crayola color #16 Pink Lung)