Sunday, March 30, 2008
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 and continues to bulk up.
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 me “where’s daddy?” She really wants her baby boy and her daddy back home and so do I.
Today, we should have another day of relaxing at home while the Groves man the hospital room. Hopefully this will give Sophia her needed dose of daddy.
I had to miss church today. I really, really wanted to go, but I caught the yuck that’s going around my family and felt pretty miserable. I woke up at 11:30 just in time to listen to Deron’s sermon on “Do not worry.” I realized that I have come a really long way in my worry. No longer do the little things make me worry. And the big things really don’t seem that big any more. I know Elijah is in God’s hands and that hundreds...maybe thousands....of His people pray for him. I’ve seen God answer prayers for Elijah.
Please continue to pray this new formula works for Eli and that he reamins pain free.
I wish you each a beautiful Sunday of no worry!
Friday, March 28, 2008
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 case. VERY RARE.
You may be wondering how in the world Elijah would be the recipient of these two mutations. That is still up for confirmation, but the geneticists believe that David and I both happen to have one of these mutations. Everyone has messed up genes in their DNA…like 6 to 8. But since you receive a good gene from the other parent, the good gene overpowers the “bad.” So, in this rare case, David and I happen to have one of the same messed up genes (out of our 25,000 or so genes). We plan to ship our blood samples to Finland to confirm the inheritance, but expect this outcome.
I cannot really comment on all of that. Honestly, my brain cannot really process that part of our situation for now. We are so focused on dealing with Elijah’s symptoms one at a time. I wanted to know what we are dealing with and now I do. Most importantly, the RECQL4 disorder, as we’re calling it, has a higher instance of two types of cancers in life. Something we can watch for and do what we can to avoid. Our geneticist will be getting as much data as he can on the few other people in Elijah’s same situation.
By the way, if you are reading this and know of someone else like Eli, be sure to post a comment. I suspect we may need international connections, but we’ll take what we can get. We really enjoyed reading your comments in our "Tell us who you are" post. Some of you tell me that you cannot figure out how to post on a blog...simply click to read the comments "4 comments" -- or whatever the number is -- and then leave your comment.
Please pray Elijah can get comfortable and have a good night of much-needed rest. Pray this soy-based formula will work a miracle for our sweet boy.
David and I know we have been given a very demanding responsibility with our sweet Eli. We accept it with faith and humility. Thank you for your help with our journey.
With love and deep appreciation,
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 fructose, which is the only carb the tummy can absorb without cilia (which Eli is missing at the moment as a result of his virus and c. diff back in February).
Grammie Ayers was on hand for the inaugral injection of RCF, and she said he was really happy afterward. You know how it is, long day, hard night, you get a shot of the good stuff, and it’s all in the past. We’re starting slowly, just a few mls at a time, and we’ll probably be here until the volume gets back up to the right level.
Please pray that the next time we escape Alcatraz is the last. Don’t get me wrong – we are still huge fans of the Saint Francis staff – but they are just as happy to see us go as we are to leave. Pray that he sleep well tonight, because that’s when his body has a chance to grow.
And also, please continue to pray for healing for baby Gavin.
Thursday, March 27, 2008
Tuesday, March 25, 2008
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 hospitalization, infection from too many antibiotics...I was hopeful we had broken the cycle, but it appears we have not.
I am sure most of you will talk about our sweet family saying: “how in the world do they manage?” I’ve been on the flip side of the equation this last weekend with my cousin’s dear baby being suddenly diagnosed with brain cancer and having emergency surgery yesterday to remove the tumor.
How do they manage?
Well, let me be the one to answer that probe: honestly, I have no idea how, but we do manage by the grace of God.
Sophia doesn’t know yet about the re-hospitalization and I can tell you, she will be devastated. Normalcy in her life is a precious commodity.
I have been looking forward to Deron’s sermon this Sunday on the red letters “Do not worry.” I could use some help in that area. David and I are going to fit it into our lives to read those red letters each week even if it isn’t how I had it pictured -- as a family around the kitchen table.
Not to complain, but David is on antibiotics for a chest infection, Sophia is on antibiotics for a sinus infection, my sister broke her toe and my mom has a sinus infection. David’s grandmother offered to put a spell on me to keep me well. I could use it. We will manage.
Elijah is still laughing, which keeps the rest of us laughing right along with him no matter the other challenges we face.
We could use your prayers! Elijah needs to get his GI situation straightened out and start gaining weight. Since we’ve been home this one week from the hospital, he’s only gained 2 ounces. That’s not good considering he’s lost nearly 2 pounds in the last two months. Pray he remains pain free. Pray they find a good vein for an IV and that the IV lasts as long as they need it to. Pray for his doctors, assistants and nurses to diagnose Eli quickly and correctly treat his illness with compassion and determination.
We love you all and thank you for your support.
Monday, March 24, 2008
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.
Saturday, March 22, 2008
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 him less agitated and a little more talkative. The tumor, which is about 1/3 the size of his entire brain, is occluding a ventricle necessary to drain brain fluid that we normally replace 2-3 times per day. The neurosurgeons have informed us that his tumor has a number of blood vessels running through it. That, coupled with its sheer size, makes tumor removal dangerous. They plan to attempt that surgery on Monday, after we've given his brain some time to relieve a little more pressure. They also want to do this on Monday because they want all possible specialists to be available in the operating room to help with his surgery. Easter weekend doesn't make for the best time to do surgery, with so many of the specialists out of town. (What timing, I know!) If they are forced to do surgery this weekend, they said they'll try, but that it is not ideal. There is a great chance that he wouldn't make it out of surgery (even with every specialist present for the surgery) because he might bleed to death if they try to remove the entire tumor in one surgery. Two separate surgeries are an option, but also more risky. They cannot remove the spots on his spine surgically. The amount of radiation therapy that would be necessary to eradicate everything is entirely too strong for a 3 year old, so that is not a likely option. Once they remove some of the tumor and have it sent to pathology, we'll know what type of tumor it is and exactly how it could attempt to be treated. Regardless, they feel strongly that there is an extremely low chance of a cure. He is likely to die and it could be very soon.
I cannot begin to express the magnitude of sorrow that I feel at this moment. I don't feel we've been given any hope and I feel that my precious time left with sweet Gavin is fading quickly. Please keep him in your thoughts and prayers. I will do my best to update our blog (http:smithscooptexas.blogspot.com), but I have to admit it's difficult. I cannot log online from the ICU room and it's difficult to leave Gavin for any length of time. We need all of the prayers we can get at this time in our life. Please feel free to forward this on to others you feel would like to know.
Wednesday, March 19, 2008
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, for making this hospital stay MUCH smoother than the last one. Elijah is free from IV's and chest tubes, and we intend to keep it that way.
As to the second most pressing question of the week: No, we still have not caught a leprechaun.
Please pray that Elijah resume his weight gain at the same impressive clip he was at all through 2007. We'd very much like to keep our appointment for arm surgery in May.
Saturday, March 15, 2008
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 tonight, and he’s been giggling throughout the day. I promised you I’d have some good news for you, and there it is. We still don’t know how long he’s going to be in the hospital, nor how his tummy will tolerate the sudden transition back to formula (and off of IV fluids), but for the moment, we seem to be enjoying the eye of the storm.
There have been moments of angst, of course. We had to remove the broviac (central line) when we discovered it had a yeast infection – the source of the 105-degree fever, to be sure -- and as it turns out, that decision was doubly important, because today’s blood tests show that the old broviac ALSO had staph all over it. My reaction to the news, I’m embarrassed to admit, was a kind of emotional disconnect, like when I heard they were canceling “Friends” – it’s devastating news, but there’s nothing you can do about it now, and big problems you didn’t even know existed have been solved. How can you be mad? More importantly, why? And at whom? Better to say “thank you” and trust that everyone knows what they’re doing.
But most importantly, you have to look at God (I imagine him above me, near the ceiling, as I have since I was three) and say, “I know you know what you’re doing, so just keep doing it.” I think that pretty well sums up my prayer these days. As long as we’re able to protect Elijah from legitimate, ongoing pain, I believe we can pretty well handle anything, and I do mean ANYTHING, that comes along.
Quick genetic update: We heard from the gene researchers in Finland, and they’re telling us they’ve confirmed the location of Elijah’s genetic mutation. I’m going to hold off giving you all the details we’ve been given until we’ve had a chance to talk with our doctors about this some more. In the meantime, keep praying for good news each time we walk into one of these guys’ offices. No amount of stickers and lollipops can make up for some of the outrageous speculations they’re making… especially because so many of them are correct.
Continue to pray for Elijah as we withstand the ministrations of our capable docs and nurses. They’re great, and they care deeply, but it’s just so hard to sleep in this place!
More importantly, pray that we get Elijah back on track IMMEDIATELY with his eating and weight gain. Remember, his upcoming surgeries will be safer the more body mass he carries into the operating rooms. Which is the opposite boat for the rest of us. I could stand to have a few less grandparents buying me Pizza Hut deep dish “Meat Lover’s.” Not that I’ll start turning them down any time soon…
One final note: If you’re ever around the Sapulpa area, stop by our place and see the Leprechaun Trap that my daughter Sophia built for school. She designed the entire thing in her own pretty little head and explained to me and her Grammie Ayers how it should be constructed. The gist is this: We made a spider web (yarn in a wire hanger frame) and set it on top of a fake pot of gold (rocks painted yellow, also her idea). It’s ingenious, but unfortunately, Sophia is now nervous about the prospect of ACTUALLY catching a leprechaun. So am I, if I’m honest… Not many people know this, but I had a pet leprechaun as a child. The gold was great, you know, at first, but then your friends change on you, and you’re just “the guy with the gold.” Also, they are hard to housebreak. And try dressing them in non-green. The drama!
One p.m. Wow, is Elijah STILL asleep? We really messed with him half-an-hour ago, reading his vitals (blood pressure, respiration, temperature, fashion sense) and pouring 45 cc of formula in his tummy. Then he went right back to sleep with a tiny little hoarse moan. He didn’t even complain that someone dressed him in little yellow duckies instead of the rugged camouflage he deserves. He’s such a great, great kid. (Insert “awwwwww” here.)
BIG THANKS to my grandparents, Marvin and Bobbie Groves, for driving up from Edmond for the better part of this week. They took care of the boy by themselves today, and they kept him well entertained. Marvin approached him in the crib when he was screaming, and when Marvin touched his feet, for some reason he stopped immediately, fascinated by those big hands on his little toes. Then they had a very nice talk... probably about me. We'd been completely helpless without the Groves, especially during our OKC trips. They are my heroes.
Good night, and keep praying.
Tuesday, March 11, 2008
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.
Sunday, March 9, 2008
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 attached to his dad. Even before his recent 3-week stint in the hospital, Eli had a favorite person: David. But now, his attachment is even deeper since David spent 3 weeks in the same room with Eli. Don’t get me wrong, I did my share of hospital time, but David was there far more than any of us. Whenever David gets within eye shot of Eli, he cries until David picks him up. Then Eli gives the person who was holding him this slanted eye look that says “Ha.” So cute to watch it happen to someone else, but not so fun when it happens to me! I’ve decided I am fine with it. David earned the top spot, for sure. I also remind David that Sophia used to do the same thing, but I was her favorite.
We’ve caught up on our sleep, at least as much as we ever can.
The Ramirezes signing out...by the way, David may refer to us as the Ramiri,but to me, we will always be the Ramirezes. To my father-in-law, sorry.
Wednesday, March 5, 2008
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 anything for us during the ordeal, and I want to continually stress the importance of prayer above all other needs. There’s always a way to get our hands on more food or clothes or X-Box games, but when Elijah is suffering and we can’t figure out why, our sole recourse is to ask Jesus to intervene. It’s part of the process that we are left feeling both completely helpless and greatly empowered by these situations where God, and only God, is able to control the outcome.
Here’s a not-so-quick list of continuing prayer requests:
- Pray for Elijah in a kind of general way, with gratitude and sincere faith, as God continues to keep him in His will and protect him from / subject him to those plans which He deems best.
- Pray that Elijah feel as little pain as possible. His intestines are traumatized, perhaps scarred, from a few weeks of C. diff and some dreadful secondary virus. He’s also been jabbed, sliced and prodded about 100 times over the past three weeks, and that’s not including the incision in his chest for the central line, NOR the major skull surgery he’s still recovering from. It’s a testament to his resolve that he demands to be entertained and encouraged to laugh and play.
- Pray that Elijah continue to gain weight at a rapid pace. He was approaching 13 pounds after the skull surgery on Jan. 28, but he’s closer to 11 lb. 4 oz. today. That’s bad news considering the major surgeries still in store for him in 2008, starting with the wrist centralizations in May.
- Pray for wisdom for Elijah’s caretakers, especially his parents and day-nurse. He’ll also begin again with the parade of therapists, who sadly have not been able to maintain their progress with Elijah for close to a month. That means physical therapy, occupational therapy (development and positional bracing), speech pathology (speaking as well as eating), and off-and-on vision and hearing therapy. We’ve got a lot of catching up to do, but this kid is up for anything.
- Please say a prayer for our extended family, the Groves and the East Coast Ramiri, who have been traveling great distances to see Elijah and give his parents opportunities to rest. Also pray for those blessed local family members, the Reeds and the Ayers, for devoting something close to 40 hours each week to Eli’s care including caring for big sister Sophia. I’d like to promise we’ll give them some downtime, but it ain’t gonna happen.
- Pray for my precious daughter Sophia, who is five-years-old and being forced to grow up way too quickly. She demonstrates a wisdom and patience beyond her years, as she withstands Elijah’s trials right along with the rest of us, but we’d much rather see her goofing off at home and not dwelling on such deep questions. As with everything, God is keeping Sophia in the palm of His hand, and she will grow into the young lady she is meant to be. But my prayer is that she be protected from the daily drama. That’s okay to ask, right?
A special thank you to everyone who visited us at the hospital and brought us food, snacks, flowers, or an hour of adult conversation when I needed it most. This includes the staff and class members of FBC Tulsa and FBC Sapulpa, who never let a day go by without a visit, and especially Amber Van Meter. Amber is a friend of ours from way back in our New Beginnings (FBC Tulsa) class days, and she’s also a nurse at the Saint Francis PICU. In addition to providing me with homemade chocolate, potato chips and smiles when we needed it most, she also requested a rotation as Elijah’s nurse at a rather critical juncture. Good for you, Amber.
Please don’t let the fact that we are back home stop you from giving me cheddar-flavored Pringles by the truckload. It’s the little things in life...
With sincere gratitude,
Sunday, March 2, 2008
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.
Saturday, March 1, 2008
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 gains back his weight and that his tummy and intestines heal quickly so that when we do try to feed him again he will tolerate it without any problems.
Elijah is a fighter and I’ve known that from about day 2 of his life, but in this last three weeks I’ve seen it even more clearly. Before this week, Elijah would shun anything being put in his mouth except his trusty pacifier. During this ordeal, I noticed Elijah was sucking down Tylenol the nurse was giving him by mouth. I found that very odd. So, I started giving him Pedialyte in a syringe by mouth and he was sucking it down like a thirsty kitten. Ding, ding, ding, Elijah was dehydrated and his natural instincts told him to drink. Makes my heart weep.
Thank you for all of your help and prayers.
With love and appreciation,