Eli's Journey

Elijah weighs 12 pounds 3 ounces today! You read correctly, 12 pounds and 3 ounces, and we did ask the nurse to double check that number. That’s an entire pound gained since his hospitalization round III began on Tuesday. He is happy and comfortable most of the time. We are thrilled. Today, his temperature shot up to 100.8, which normally wouldn’t seem like a big deal, but for Eli that could mean the beginning of an infection following his central line placement (he's known for that type of infection) so he will be watched closely. We asked Elijah’s two physicians today if they think we should go ahead and postpone Elijah’s surgery scheduled at the Shriner’s Shreveport hospital in May. They agreed that we should not postpone yet. Dr. Ranne thinks Elijah will begin to thrive and should be ready for his wrist centralization and forearm bone straightening surgery in May. This is good news. Please pray his strength continues to increase. Pray that Elijah stays infection free, pain free...

Eli remains in the hospital under the capable and close supervision of Dr. Ranne and Dr. Donovan. We really love these doctors! Eli is taking in about an ounce of the soy-based formula every three hours. So far, so good, but the verdict of a homerun is still out. Eli continues to receive adequate nutrition through his TPN in his central line. His formula is increased slowly to watch how his body reacts to the new intrusion. Grandma Bobbie and Grandpa Marvin came for the weekend. So nice to have them here so that David and I could spend some time with Sophia. Last night at bedtime as David was preparing to return to the hospital for night duty, Sophia began crying “Why does Eli have to be sick, why, why? Does he do it just to take my daddy away from me?” Of course, this just broke our hearts right in two. David laid down with Sophia until she fell asleep with one leg propped up on him so she’d know if he moved. He did sneak out without waking her and this morning her first question for ...

If you haven't read David's post below, be sure to do so, he updates you on our current situation in the hospital, but I thought it time you received the mom’s perspective. Elijah is cranky. He is really tired of being messed with. Even “nice” nurses come in and he fusses at them. He wants to go home and be snuggled and loved like a baby should be. And, more than anything, that’s what I want too. I know David enticed you a few weeks ago saying we had results from Finland on what crazy thing caused Elijah’s uniquenesses. Here’s the scoop from a non-scientist (me). We are told Elijah has two gene mutations on RECQL4 (that’s the name of a gene). There are three syndromes that have been named in association with mutations on that particular gene (out of like 25,000 genes, by the way): Baller Gerold Syndrome, RAPADILINO and Rothmund Thompson Syndrome. Elijah’s geneticist believes Elijah has a mixture of these three syndromes as he exhibits symptoms from all three. He is a very rare...

Dave from the hospital: Dr. Ranne gave Elijah a central line yesterday afternoon so he could go back on the TPN (total nutrition through an IV line). The line is in his shoulder, which is less hinkey than a forehead line, but didn’t require surgery like the chest line. He tried to sleep last night, but there was some pain, and also, he hasn’t been able to tinker with his Corvette collection for, like, a week. The ’76 is still up on the blocks. You can just see it in his eyes… Today at 3:00 he received formula for the first time all week. Since February of last year he’s been on Neocate, a formula so synthetic it actually tastes like plastic, but if you can believe we’ve got him on something even MORE of an affront to God’s nutritional plan for the human race. It’s called RCF, or Ross Carbohydrate Free, which would sound delicious if you saw it on the shelf with “A Coca-Cola Product” printed underneath. Actually, this stuff is soy-based protein only. Soon, the doctor plans to add fructo...

Take a minute to sign into the blog, then reply to this post. Tell me, and everyone, who you are and what Elijah means to you. If you're the friend of a friend, then you're family now. Remember, the best blog strings go on for miles. As you view our list of friends, know that we keep each of you in our prayers just as you pray for Elijah. Dave

Dear Friends and Family, I know in my post yesterday, I quickly noted that Eli was home and happy. That was true, yesterday. Today, he is being re-admitted to the hospital for dehydration. To be really technical: he’s pooping too much. The docs will re-test him for c.diff and a battery of other possibilities. Shall I remind you about our last two months? Eli had skull surgery on Jan 28. He was in the hospital in OKC for one week after that surgery, then home for one week. Then, hospitalized for c. diff and dehydration for 3 weeks, then home for one week. Then, hospitalized for MRSA and a nasty fungal infection for one week, then home for one week. Now, hospitalized for something “to be determined.” Elijah seems to be caught in a vicious cycle of infection: antibiotics to fight infection, infection from too many antibiotics, more antibiotics to fight the infection from too many antibiotics, a new infection from hospitalization, more antibiotics to fight the new infection from hospitaliz...

I am pleased to report that my cousin’s baby, Gavin Smith, made it through his brain surgery today and the doctors believe they removed the entire tumor. Gavin did not require any blood transfusions and is doing well. Our family believes in God’s miracles. Today we received one. In the coming days, pathology reports will determine what type of cancer the baby is dealing with and next steps for his future. Please continue to remember Gavin and his parents, Stacie and Jeff, and the extended family in your prayers. I promise to update you on Elijah very soon, but know he is home and happy. With love, Melissa

Today, I am using Elijah's blog to share devastating news regarding Elijah's second cousin, Gavin Smith. Gavin is the son of my cousin Stacie (Ayers) Smith. She is the daughter of my dad's twin brother and is the age of my brother. We grew up very close. I am heart sick for her. I know that you all pray for my son and your prayers are heard and felt! Please use your prayer power today and in the coming days and weeks to pray for Gavin and his parents and grandparents. Below are Stacie's words, which will break your heart. Melissa Dear Family & Friends, It is with extreme sadness that I write to tell you of our horrible news. We found out this "Good Friday" that our beloved Gavin has an enormous brain tumor, which they say has spread throughout his spine and is thought to be both aggressive and malignant. He presents with hydrocephalus, which has made for extreme pressure on his tiny brain. They placed a drain in his skull earlier today, which has made...

I got scolded by one of our friends today for not updating you all the moment Elijah was released from the hospital, which was yesterday in the late afternoon. She said that it worries her to not hear new info right away, especially when he's ill, and that the thousands of people she's sent the blog link to feel the same way. I had no idea! Leaving the hospital is a crazy, hurried event compared to the days-long, pack-muleish setting up of camp when you first go in. That's my excuse, anyway, for not calling even my mother as soon as I heard the good news. And the good news is good. Elijah's eating the same amount he was before the skull surgery on Jan. 28, and he's looking better than ever, with a warm glowing tan and a disposition to match. Now that he's in his own home, he's tolerating strangers with a smile, since none of them wear white coats. Having said that, I am deeply grateful to the strangers in white coats, Dr. Ranne and his team at St. Francis, f...

Dave at the wheel: Howdy howdy howdy. That’s how we say “hello” in Oklahoma. In fact, I’m pretty sure you can get a ticket from a cop if you greet someone with anything other than “howdy,” “howdy-do,” or a polite tap of your imaginary hat. Some people say “hey,” but it’s alright if they quickly correct themselves. The Oklahoma jails are full of West Coast tourists who couldn’t keep from saying “Sup, dawg.” It’s day five of our most recent excursion into the wonder of hospital-ity, care of Saint Francis Hospital (known to my pal John Hartmeyer as “Saint Frank”). My grandparents treated me to a Pizza Hut deep dish “Meat Lover’s” pizza tonight, and it’s coloring most of my ongoing pessimisms in a warm glow of red pepper-flavored steam and marinara sauce hues. So forgive me if I come across as overly giddy, as opposed to my last blog-posted rant from the other end of the spectrum. Also, forgive me for that rant. I was not my fuzzy, pragmatic self that evening. Elijah’s sleeping well tonigh...

David says: Well, we’ve been home from the hospital exactly one week, and Elijah developed a low-grade temperature last night. We watched it overnight, and by 1:00 today (Tuesday) it was 102.1. We ran to the urgent care clinic, and they told us his bloodwork didn’t show any signs of infection around the broviac (the tube into his aorta that’s currently his only source of nutrition), but with a temp of 105 – yep, you read correctly, 105 Farenheit – he needs to be treated as though a broviac infection is exactly what he has. Melissa’s holding the miserable little kid at the hospital while I’m at home packing and writing to you lucky people. She asked if I’d update the blog, and I told her I wanted to calm down first, otherwise I’d just type “THIS SUCKS” a thousand times and hit “post.” So I guess I’m calm. But for the official record, this sucks. Pray like crazy, as Deron Spoo says. I’ll write again soon with good news. David

The relief from finally being home from the hospital is our glee of the week. We’ve decided that Sophia doesn’t really care if she is home with us as long as she knows we are home and if she wanted to join us, she could. That’s fine with us.Elijah continues to be fed solely TPN through his semi-permanent central line (discussed in earlier posts). Monday he will have blood drawn to evaluate the TPN’s effectiveness and maybe reveal our next steps in getting him back to regular digestion. I know your prayer lists for Eli are long and I thank you for continuing to lift up the requests mentioned earlier. Please also pray that David, the physicians, the surgeons and I will know the right time for Elijah’s next surgery that is currently scheduled for May 13 in Shreveport. We really hate the idea of getting his schedule off for his surgical interventions, but whatever is best for him is best. Since we’ve been home from the hospital, Eli has lost more weight. That concerns me. Elijah is atta...

Papa Dave checking in... It’s 5 a.m. on Wednesday morning, and I feel great. Elijah is sleeping at home for the first time in 23 days, and he just enjoyed about 11 hours of uninterrupted sleep, which means 11 hours of sleep for the rest of the Ramiri in the home. All four of us under the same roof... I’m not surprised at how grateful I feel. Cheri, Elijah’s loving nurse, is back with us again and she has the medicinal side of life well under control. The boy is continuing to receive total nutrition through a tube pouring into his aorta (the big artery closest to the heart) with no food in his tummy. The TPN feed will continue to diminishing degrees for the next month, as we slowly bring him back to the world of digested foods. For those of you wondering, the aorta line, or central line, isn’t causing him much pain at all, but we’re keeping the Tylanol close just in case. Thank you to everyone who prayed for Elijah these past three weeks. I know that so many of you asked if you could do...

Yesterday, Elijah decided he should stay in the hospital so he gave his circus tickets to Sophia. We had a great time at the Akdar Shriner’s Circus. We are so thankful for the fundraiser that makes the Shriner’s Hospital possible for our dear son. Elijah seems to be gaining strength. He has nothing going in through his tummy, but is receiving adequate nutrition through his central line. Now, we just wait and give his intestine time to heal before trying to feed him again. Thank you for your continued prayers. Melissa

Elijah was taken for surgery on Thursday afternoon to insert a central line (Broviac catheter...feel free to Google that for more details). For the first time in his nearly three week stint in the hospital, we had a consult with his GI doctor who said he needs to stop eating for at least a week to let his tummy and intestines heal from the virus that caused serious damage. That damage is keeping him from absorbing his nutrition properly, which caused Eli constant discomfort and dehydration. He has lost more weight – down to 11 pounds 4 ounces, a major step back for us as he was nearly a strong 13 pounds a month ago. Since his Broviac placement, he is on TPN, which is nutrition via vein. He seems to be doing better, but he still has a pretty long haul ahead in the hospital. Please pray for Sophia, this has really taken a toll on her. David and I are just plain tired and heart sick from watching Elijah endure so much pain. It just isn’t right! Elijah seems so fragile. Please pray he gai...