This was posted tonight by Giles ( he writes for Elijah:) I was greatly encouraged by reading this tonight! Please continue to pray for this little guy! I just put myself in Janel's shoes and see my baby boy going thru this and it gives a whole new perspective to their trial. and keep in mind how GREAT our God is!!!!!!
Elijah here—
It’s been quite some time since I picked up my laptop to sketch you all a note, but I’ve kinda been on sabbatical. You know, trying out that mythical land called ‘HOME.’ And all things considered, I kinda liked it there—even think I’ll go back some day—but for now I’ll keep calling Wauwatosa home (since home is wherever mommy and daddy are). After escaping the NICU, the past couple of months have truly been an adventure! My wonderful mommy has had her hands full. She’s felt more like a nurse than a mommy, but daddy and I think she’s doing a GREAT job. As most of you know I’m still a work in progress, feeding tube in my tummy and cannula for my oxygen, but the feeding was the biggest issue. Honestly, it just hurt my tummy to eat and nobody knows why; they just thought it was a formula issue. So how do you fix a formula issue? You change the formula. So we played “Change that Formula” for the past couple of months. Not a fun game for anyone involved—I’ll spare you all the fun details that my daddy would be tempted to share ‘cause I have a little more discretion than him (which mommy is most thankful for). Bottom line: it’s been a fussy couple of months.
Mommy knew something wasn’t quite right (she’s known all along...I love my mommy), so she recruited Gramma T and Auntie Jen as her body guards to rough-up the doctor if he wouldn’t send us back to Milwaukee to get things taken care of. But Dr. Theado is pretty cool and didn’t even put up a fight. In fact, he was happy to send us to Milwaukee. Besides, he wouldn’t have stood a chance against my granny (when her and mommy get together they become quite the tag-team, daddy calls them the ‘dramatic duo’—I’ve got stories). Anyway, I was admitted to Children’s November 9th and camped out on the 7th floor for about a week. After throwing the doctors curve balls and change-ups, they finally decided on a diagnosis, “Mr. Elijah, you’ve probably re-herniated.” Well, there you have it. Things that should stay south are migrating north, again. So the game plan? “Go back home for a week and we’ll get you into surgery on the 23rd. Besides, we don’t want you to get the piggy flu while you’re here.” Not what ya want to hear when you’re at the hospital—go home ‘cause you’ll be safer and healthier there. So, we went home for that week, sort of. During that week ‘home’ we made two additional trips back to Milwaukee (trips that will live on in legend and folk lore, but the details I will not disclose in writing for the ‘dramatic duo’ would probably end my writing career. Some scary, funny stuff goes on when those two get together.)
The twenty-third finally came, the day of the big surgery part two. Surgery went well, all seven and a half hours of it. Yep! It was truly a long day for everyone involved. Can you imagine working on something that demanded your complete concentration and precision for that long? What happens when you have to go potty? Or when you get hungry? Or you have to sneeze? I’m pretty sure a simple “Oops, my bad” wouldn’t cut it. Anyway, surgery entailed the docs putting a bronch-scope down my lungs to see what was really going on down there. Things seemed to look pretty good (for having one and a half lungs that is). They also did a procedure called a nissan, which involves wrapping part of my stomach around my esophagus to help with my reflux issues. And finally, the main event was to move the contents of my tummy out of my chest cavity and back where they belong—in my belly. Come to find out I actually didn’t re-herniate as was initially thought, but my diaphragm did stretch (balloon) so much that everything migrated north. So the docs reinforced my diaphragm with another tough, but porous material hoping that it will hold strong. The good news is that I didn’t need an entire new diaphragm, and I didn’t need to get a skin graph (which was one of the possibilities for my new diaphragm).
Surgery was Monday, by Wednesday I was already a breeding ground for an infection. Once again we throw the percentages out the window and watch them shatter on the pavement below. What would surgery be without an infection anyway? Due to the infection my incision had to be re-opened so they could draw out the infection and keep it from becoming a fluid collection like my last surgery. Things seem to be going as planned over the weekend and Monday was a wonderful day. But, (you knew a ‘but’ was coming. There’s always a ‘but’) Monday night and into Tuesday morning that mean old infection finally wore my tissue down so that my incision split all the way down exposing my liver and bowels. Yep, the stitches in my muscles just ripped right out. Tuesday turned into chaos!! They had to rush me to surgery—and by rush I mean that the call came in at 8:30am to get me in, but it didn’t happen until 7pm. I really need to get a hospital dictionary because terms and words seem to have a different meaning than most other places on this planet. This day held an adventure for the ‘dramatic duo’ that they never want to relive (just to let you know, most of the adventures they have are life and death—truly scary events that we look back on shaking our heads and eventually laugh at, only because if we didn’t laugh, we’d cry—a lot). So while awaiting surgery, the ‘dramatic duo’ were trying to keep me comfortable and my nurse, Jeff (he’s another note entirely), was punching medication buttons like they were video games trying to keep me sedated and pain free. In the midst of all the “fun,” I started coughing and gagging. Have you ever coughed with an artificial diaphragm and all your stomach muscles ripped apart? Me neither until now. It hurt something fierce! Nurse Jeff called the ‘dramatic duo’ into service once again, “Granny! You hold his head still so he doesn’t lose his breathing tube! And mom, put pressure on his chest and stomach!” So there they were just trying to be a mommy and a granny, but had to become super heroes holding my head still and my insides in. Needless to say, Tuesday was the longest, most difficult day of mommy’s life. Have I told you lately that I love my mommy? Well I do! Tons and tons. And gramma too! Daddy couldn’t take being away any longer. God worked it out so he could leave all his responsibilities and just be with us.
Wednesday, I started getting better but there was a little problem (I know you’re shocked). The pressure was mounting, literally. I hadn’t pooped in a week and a half. Things were fermenting in the nether regions; the not-so -perfect storm was brewing...and brewing...and brewing. With the bile backing up and my body giving no ground to the multitude of laxatives the nurses were pumping into my system, something had to give. We just had some concerns as to what would actually give. At this point anything is possible. Thursday they called in the ‘professional plumber’ and gave me a contrast enema. So now we wait. I also got a CT scan to check out my lungs. While all this was going on, I failed to mention that the docs were concerned with my past x-rays. They thought I had developed a cyst on my lung—a rather large mass that seemed to be impeding my lung from expanding and growing. The thought was that they would need to surgically remove it at some point. Following the scan, the specialists determined that no such cyst existed. Instead, the mass was actually my lung—parts of it workable and others not-so-much. The good news is that no operation is needed and my lung situation should be okay. And by Thursday evening the flood gates were opened and the not-so-perfect-storm unleashed its fury. I’ll spare you the gory details; let’s just say I’m back to my birth weight now.
It’s Friday now and I just burned through enough morphine to kill a handful of adults. Sedation and pain control have been two of the toughest things to get under control. You see, I’m not the text book kind of a kid. My metabolism is off the stink’n charts and I burn through meds like it’s candy. It seems like they got my pain situation down okay, but the sedation thing is still kinda tricky. Guess I’m the little (*) in text book; I leave them all scratching their heads and going back to the drawing board. But, today was really enjoyable. I was pretty comfy all day and even played with mommy and daddy some this evening. We are hoping that I can get this stink’n rotten tube out of my lungs by Sunday and back on the nasal cannula.
I know so many of you are praying and trusting God to move and work in specific ways, so here are a few things to talk to Him about:
1) They can get my sedation and pain meds where they need to be (things constantly change in this area and the team needs continual wisdom from God)
2) That I can get extubated (tube out) soon and on the nasal cannula
3) Infection to be gone (and never come back again!)
4) Incision to heal fully
I’m sure we’ll post more soon since this tends to be a roller coaster kind of a situation. I love you all, and want to say thanks for praying so earnestly and faithfully for me and my parents. We are truly encouraged by your constant support and tangible love. I just want to remind you as you do pray, to actually seek God and not just what He can give or do in this situation. Remember, like Tozer said, “God is not a means to an end, He will not be used.” So, I trust you are learning to trust Him more; that you’re getting to know Him better; that you’re seeing Him in the details; that you’re taking Him at His Word. Even though we can’t always see, we need to keep trusting and keep being faithful. It’s comforting to know that God is on the throne, that He holds this world together, and He doesn’t need or seek counsel from any one of us—quite frankly because He has a better plan than we could ever come up with (see Job and Isaiah 40). So let’s be still and watch Him work.
