Updates on Elijah and His Surgery
Hi all. We’re home. We’ve actually been home since yesterday late afternoon.
Eli is getting around well. Using a walker some, but for the most part he’s getting around on his own. We’re all exhausted but had a good night’s sleep.
We’ll share more details later. Please keep checking in over the next couple of weeks for updates.
He’s up and about. After a struggle with Ray and the OT this morning he walked a bit. Then, this afternoon, the Physical Therapists came by and took him for a walk down the hall and back. It was great!
Looks like we may get to go home tomorrow!
Praise be to God! It was a struggle, for Eli and for us, but he sat up on the side of his bed unassisted for several minutes, walked to his tray table, and stood playing with some small toys for quite a while. It was a HUGE step. Heather, the OT, came in this morning and she and I (Ray) worked with him for almost an hour. She was great and didn’t give up.
He still has a little ways to go though. Today was huge in giving him confidence in the strength of his back and legs. Please pray that he would not fear the possibility of pain as he tries to move, but have the confidence and courage that God promises us. Pray for the continual improvement of strength in his back and legs.
We thank God for all of you and your encouragement and prayers.
I can’t believe we’ve only been in the hospital for a few days. It seems like so much longer. We’ve met so many families that have been here for months. There’s an infant right next door to us that has had NO ONE with her the entire time. We aren’t allowed to go in her room, but they keep the door open and I stand and look at her and pray for her. The nurses say that there are many times that the patients have no one that comes and stays with them. I’m just so thankful for friends and family that have helped make it possible for us to be here with Eli. There are so many things to be thankful for right now, and this morning I’m trying to praise the Lord and thank Him….for family, friends, great insurance, a great children’s hospital, that we found the tumor before it caused permanent nerve damage, Ray’s job (Lifeway) that allows him to be here for his family, A comfortable pull-out couch in the room, great therapists, doctors, and nurses. We are so blessed!!
Well, yesterday was still slow progression but atleast there was some. Eli’s mobility has been a much bigger challenge than we anticipated. Most kids that have this surgery are young children who aren’t walking yet. Therefore, their recovery is much easier. Since Eli is more mobile in his everyday life, therapy is a bigger challenge. We got him out of the bed two times yesterday. It was very hard and painful, but it’s progress and we’re encouraged by that. He still hasn’t put any weight on his legs yet. This is what is keeping us at the hospital. At first, they said he needed to walk before we left. Now they’ve changed that to “he needs to stand independently or atleast with his walker” before we leave. It’s very difficult to get him to transfer from bed to wheelchair to potty etc. It takes both Ray and myself while Eli is crying the entire time. It’s very exhausting, and I don’t know how we are going to manage this at home. They’ve given him a little walker, but so far he can’t hold himself up on it. One problem is that he only has full use of one hand because the other has a cuff on it to protect his IV site. So PLEASE PRAY THAT the pain will drastically decrease enough today that he can stand up and actually walk. We need a miracle in this area, and I know the Lord is more than capable.
You’re welcome to come visit today if you want. If he’s in the middle of a therapy session or we’re moving him, you’ll have to wait outside. Other than that, I think he’ll be up for visitors. He slept great last night so probably won’t nap much today. You can always email or call before you come just to make sure it’s OK.
Love,
Angela and Ray
The Lord layed a huge blanket of peace, rest and comfort on our entire room last night. It was such a loving gift from our father. We all slept great. Even brave Eli who had to be turned every two hours. He would do his deep breathing and by the morning, he wasn’t even crying when he was turned.
Please pray for a day of major breakthrough in his pain level. Pray that his therapy session today would show miraculous progress and that he would be able to walk without asistance today. Pray that fear would be completely GONE in the name of Jesus from his little mind. The fear and anxiety that comes into his mind when he even thinks about moving is really distracting the progress. So please pray that he would cling to the Lord when he is fearful. We are going to begin praying verses related to that over him and helping him memorize some of those today.
We hopefully will be up for some visitors today. If you want to come, call us or email us and we’ll let you know what time might be good.
Love,
Angela and Ray
(warning, this post will most possibly produce tears for any mother)
One beautiful, (well, it wasn’t beautiful at the time, but now I see it as such) yet heart-wrenching, experience we had yesterday was when Eli was sitting up in his chair trying to endure the pain. He suddenly got this excruciating ringing in his ears and sharp pain to his head. It really scared us because it came on so quickly. He was screaming and holding his head and we were just shocked and (freaking out really) trying to comfort him. So Ray called the nurse and Eli looked me dead in the eyes and said PRAY MOMMY, PRAY. So Ray and I were like (Oh, yea, duh) and started praying over him. Then Eli began to cry out quite loudly “Touch me God, please touch me”. He did this continuously for almost 15 minutes until the pain subsided. He probably repeated that phrase atleast 100 times just looking to the sky the entire time. It was scary at the time because we weren’t sure what was going on, but we were truly inspired by Eli’s enduring faith. The way he just kept repeating the phrase over and over, expectantly waiting for an answer. It was life-changing for me. I don’t think we will ever forget that experience.
Wow. The doctors could have been a little more informative in the beginning about the degree of pain Eli was going to experience today. I don’t know what I was hoping for, but Ray and I were caught totally off guard today by the intensity of Eli’s pain today. Last night was bad, but today was worse as they began to move him for the first time. It was all I could do to not burst into tears along with him as he kept looking at me like “why are you letting them hurt me like this”. He got out of the bed, “walked” (we pretty much carried him and he moved his feet forward a few inches), and sat in a chair for a few hours. After watching him in agony I left the room and had a little emotional outburst of tears. When I recovered, I walked back towards the room and Dr. Tulipan was sitting at the nurses desk. He asked me how Eli was doing. I told him about how shocked we were at the level of pain he was having. He responded by saying “Well, the surgery he had is one of the most painful for a child”. Thanks for the subtle preparation there, Dr. Tulipan. Then he asks me “Is Eli experiencing any weakness in his legs”. Well, if not being able to put weight on his legs without screaming for God to touch him constitutes as weakness, then YES!! He also has been experiencing severe headaches. I think the day after surgery must be the worst, and it’s almost over, Thank the Lord. Please pray for supernatural, speedy healing of the nerves that are delivering pain to his back. Pray that Ray and I can be strong for Eli and continue believing together in prayer that God will be glorified through all this. What a day. Hoping the evening is better. He’s back in the bed now, thanks to our friend Keith and Ray carrying him quickly. It wasn’t pretty, but it’s over and he’s finally comfortable and looking through all the goodies people have brought.
Thank you to everyone that has brought and sent gifts and goodies. He is finally feeling up to going through some of it.
Thanks for all your prayers. We love you all and thank God so much for you. You guys are definitely holding our arms up like Aaron held up Moses’ arms. We are feeling it deeply and tangibly.
We still aren’t sure about visitors yet. When he is in pain, he feels like he has to be so brave when a visitor comes. Then he whispers to me to ask the person to leave. This is so NOT the Eli we all know who loves people. I’m hoping we will see the true Eli back some time tomorrow. Please pray that along with us.
Love,
Angela and Ray
The night, although long, ended up better than it started as we began to learn how to better manage Eli’s pain. His pain level is creating a lot of anxiety in him though, which isn’t conducive for visitors at the moment. Please continue to pray tha his pain level will subside quickly! We’ll let you know when it’s okay to come by. Thanks!
I don’t have my email address book here at the hospital, so I’m posting this request to the site, in hopes that some will be up late and read and then PRAY.
Unfortunately, around 6:30pm, Eli’s anesthesia had completely worn off to the point of excruciating pain to his back. The doctors gave him morphine through his IV which gave him some temporary relief. He insisted I lie in the bed with him, so down I went, confined to the same grueling horizontal position as Eli. For several hours he would be in and out of sleep, with random muscle spasms to his back that put him into an intense episode of pain. It absolutely amazed me at how brave he was being. He would do this sort of “lamaze” type breathing until the pain subsided (with absolutely no coaching by me- he must have picked it up when I was pushing him out of my womb just five years prior). By then he was terrified that someone was going to touch the bed, move, or breath close to him and that it was going to hurt his back. Finally, with much persistence, we found a new cocktail of medication to hopefully stop the spasms. After holding the laptop in a uniquely awkward fashion so he could watch a Caillou for a while, I finally decided I had to get up. So after five hours of the horizontal hell, Ray and I switched places and I emptied my bladder and put on my PJ’s. Now Ray is snoring so loudly that the cocktail must be working, because Eli is snoozing soundly.
So, if you get this in the night, please pray that the pain would subside and that Eli would get restful, continous, uninterrupted sleep. Pray that the nurses will be carefully attentive to his pain management and that we will be discerning in how to comfort Eli and gracious as to how to communicate with the hospital staff.
One more thing….during one of Eli’s spasms, as he was breathing deeply, he looked at me with tears in his eyes and said “Everyone is praying for me, right?” I thought I was going to completely lose it. But I said, “absolutely” and then started praying louder over him. It comforted him.
Love,
Angela
The Lord was so faithful to answer so many prayers for us today. Everything went very smooth this morning. Eli went right back to surgery with the doctors and nurses without any fret at all. He just sorta waved goodbye as he went for a “ride” in his rolling bed.
The surgery was scheduled to take atleast three hours, but was finished in less than two. The surgeon gave an excellent report. The tumor came out much easier than they expected, in one large piece. This is a good sign that there were no small remnants left behind.
In recovery, he slept for about an hour and then woke up quickly. He enjoyed several blue icee’s and some cottage cheese along with an incredible nurse named Emily. As the local anesthesia to his back began to wear off, he began to get quite irritated. The pain along with the fact that he has to lay flat on his back has made for a very sad and quick tempered Elijah. After a little battle with some oral liquid Tylenol with Codeine, he finally got some relief and is taking a little nap.
OK, the nap only lasted a few minutes, but now Ray is reading a new Batman book with lots of fun (annoying) noises. That gives me a little more time to write.
We were moved into a room around 3:30pm. We’re in room 8312 of Vanderbilt Children’s Hospital.
Many of you have asked if you could visit and the answer is absolutely. I know Eli would love the company. Visiting hours are from 9am to 9pm. For visitors under the age of 12, you have to have been free from any cold, cough, fever, or drainage for 7 days. When you come to the 8th floor, you will go directly to the nurses desk. You will receive a visitors badge there, and then be allowed to come into the room.
We initially thought it would be good to wait until he is sitting up to have visitors. Now we are thinking visitors might be a good distraction while he is confined to the horizontal position.
When Eli is resting, we will have the hospital phone turned off. You can call us on our cell phones or email us to let us know you are coming. Angela can read her emails from her cell phone.
Thanks for your continued prayers. We are so thankful to our Lord for carrying Eli and us through this process.
Love,
Ray and Angela
Going to a room!
Getting a little something to eat.
Having an Icee! They have their own Icee machine here!
In Recovery. No room for us. Could be a while.
All went well! Should be awake soon. Details this afternoon.
surgery done. We’re going to talk to doc
no update yet. Trying to see what we can find out.
Lots of surgeries today. The waiting room is packed.
Off to surgery. 3 hour procedure.
make that anesthesiologist
Just talked with anestisiologist
waiting to sign in so that we can wait
Trying to get the boy up and moving
One thing Eli loves to do, that he won’t get to do much the next several weeks, is swim. Even though his back hurts from time to time because of the mass on his spine, it hasn’t slowed him down TOO much. Here, he and his buddy Nathan get one more swim in before tomorrow.
Get updates throughout the day tomorrow here or follow @ twitter.com/elijahray if you are so inclined.
So, for several years now, one thing that has been on the top of Eli’s list to get is a mohawk. Our friend Baker, one of the coolest kids we know, has one. And since Eli first saw it he’s been fascinated by it.
Baker’s is pretty tame on the mohawk scale. Yes, his head is shaved on the sides, but the actual “hawk” (assuming the shaved part is the “mo”) is wide and only an inch or so tall. What Eli really wants is what you and I think of when we think of a mohawk — shaved head, spiky, punk-rock-style. We’ve been out more than once and seen a punk-rock-style mohawk only for Eli to litterly drop what he’s doing, stop the person, and say “I want my hair like that.” We got it cut for him recently short enough that he can put it up in a “faux-hawk”, and that satisfied the urge for a while.
Eli’s new obsession it seems is wheelchairs. Now, not once in any discussion related to this surgery has there been mention of a wheelchair, or him needing to use one. Thanks be to God that we caught this well before there was any need for anything like that. But as of late, that has been his number one request. Why? “Because they’re cool!” has generally been his explanation. I think it’s primarily because of an exhibit at the Adventure Science Center, oddly enough sponsored by Vanderbilt Children’s Hospital, that shows kids what it’s like to use a wheelchair to do everyday things like getting around and playing. They have to actually get in the wheelchair to do those things. We can’t keep him out of that exhibit. He loves it. And he’s really good at too.
So, I have no doubt that before our time ends at Vanderbilt, you will see Eli tooling around the halls in a wheelchair. Probably popping wheelies and running people over. Don’t be alarmed. At least he hasn’t shaved his head for a mohawk.
Eli gets a special birthday delivery and we have a little talk about what’s going to happen when we go to see Dr. Tulipan at the hospital next week.
As we announced yesterday, Eli’s surger has in fact been rescheduled to next Wednesday, July 9, at 10:00 am. The explanation from the surgeon’s office is that two emergency surgeries needed to be scheduled for this morning, our doctor isn’t on call this weekend (so he doesn’t want to have to come in), and the OR’s are fully booked for Monday and Tuesday. We are, however, on a “priority waiting list” for Monday and Tuesday should something get canceled.
It is obviously frustrating to reschedule your whole life, take off work, coordinate friends and family, and mentally prepare everyone for going through this, only to have it canceled. But, I do take some comfort in knowing that, despite his pain, he is in a lot better health than a lot of other kids.
Thank you all for your prayers. Please continue to remember Eli, and what God is doing through all of this, as the new date approaches. (And please pray we’ll just be able to get this done!)
Just got word from the doctor’s office that Eli’s surgery has been rescheduled for NEXT Wednesday, 7/9 @ 10:00am.
More details to come.
This post isn’t about Eli, but while we have your attention. Ray and I have a friend that is facing an invading battle with cancer. Daniel is an amazing man of God who has been robbed of so much through this aggressive cancer threatening his life. We want to use this opportunity to ask those of you who believe in the miraculous healing power of our Lord, to boldly stand in the gap for Daniel. His cancer advanced so quickly that surgery is no longer an option. He is receiving powerful radiation and chemotherapy to combat the tumor. He is on a temporary feeding tube after losing almost 20 pounds to the effects of the cancer. Pray that this cancer would be crushed completely by the resurrection power of Jesus Christ. Daniel is in his early thirties and still has so much to give to so many. His testimony and faith in the Lord are powerful and contagious. Please pray and visit his blogsite at:
www.patdanielsmith.blogspot.com
Believing in His Healing Power,
Ray and Angela
We’ve gotten a few notes from people that aren’t up to date with what’s going on with us. Here’s an update from Angela and Eli.
This past Sunday we had two birthday parties for Eli. You might already know that Eli was a 4th of July baby, so he’s going to be in a hospital in bed on his birthday. Wanted him to be able to have fun and enjoy his birthday, so we had our families over Sunday right after church, and some of Eli’s buddies and their families over later that evening.
He got LOTS of great gifts, including plenty of things to do while we’re in the hospital. His friend Seth gave him a copy of the book Franklin Goes To The Hospital. What a great book! It talks about a young turtle named Franklin that gets hurt playing soccer and has to check in to the hospital overnight for surgery. Franklin goes through a lot of things that Eli is going to have to go through. One of the best parts is when Franklin’s doctor is encouraging him to be brave, she says, “It’s okay to be scared, Franklin. But being brave is doing what needs to be done even when you’re scared.”
Please pray for a brave heart for Eli. And pray that God would be glorified in Eli through it.
Thank you so much for coming by to check on Eli.
We will be posting regular information and updates about his surgery and time in the hospital here.
Hopefully we will be able to post pictures and video of the whole experience, please comment on anything you see and send him your own pictures and video!
I will be posting some updates via Twitter, and all of those will be posted here. You can follow us there if you like, but to be sure you don’t miss out on anything, subscribe to this site’s RSS feed, or check back here regularly.