We are home! We finally got out of the hospital today at about 3pm. We literally had no extra room left in the car after we shoved in all the stuff we had been collecting over our 3 week stay there. It is so great to be home, but it feels a little strange now since we have been so used to being in the hospital.
Chris and I had to do some grocery shopping right away after we got home, but since then we have just been hanging out here all night. Elijah was definitely happy to get out of the hospital, but he still had a pretty cranky day today. He is clearly frustrated that he can't move like he used to. He can pull himself up to standing, but he can't walk very well. And he can't stand up without assistance, which is really frustrating him. He's also pretty attached to Chris and I, he doesn't want us to leave the room. It is totally understandable that he is having a hard time, but it is definitely hard to see. And it's hard to comfort him because he just doesn't understand why he can't do what he could before.
Tonight he was so grumpy that we put him to bed right before 7pm, which is way earlier than he's been going to bed at the hospital. Poor kid is just worn right out! So are mommy and daddy :-P It's unfortunate because we still have to give him drugs every 6 hours, which means midnight and 6am tonight... no fun. We have to keep him on a tapering schedule of one of his sedatives. It's not a large enough dose to really effect him much, but you can't just stop cold turkey with it or he will have withdrawals. So we will be giving him this medication every 6 hours for a little over a week longer.
Even though our poor kiddo is still having some troubles, we are all more than thrilled to be home and out of that hospital! Tonight we unpacked, did some laundry, played with the kitties, ate some supper, put Elijah to bed, and watched a movie. It was great :-) Now I don't know why Chris and I are still awake because we are so exhausted!
Thank you again everyone for your prayers and support. Praise the Lord that we came out of this and we are actually home! I still can't believe the miracle the Lord worked on our behalf! I am planning on posting a blog of Elijah's journey in pictures someday, we'll see when I get around to that. In the meantime, please keep us in your prayers whenever you think of us. Since we never did find out what happened to Elijah, we are going to be on the lookout from here on out. Please pray for his continued health and safety! And please pray that we can all catch up on our rest and get back to the real world! Thank you so much, we love you all!
Monday, September 28, 2009
Sunday, September 27, 2009
September 27th
Sounds like we are getting released tomorrow! Praise the Lord! I will let everyone know if all goes well. In the meantime, here is a picture of Elijah cruising the hospital halls this afternoon. He pretty much thought this was the coolest thing ever.
P.S. Today was my wonderful husband Christopher's birthday. I am so incredibly grateful to have a husband who stands strong with me through all of our trials and who never goes a day without letting me know how much he loves me. I couldn't ask for a better husband or a better father for our child, I am so blessed to have him in my life. I love you Chris! Happy Birthday baby!
Saturday, September 26, 2009
September 26th
I know I didn't write a post yesterday, but yes, we are still here at the hospital... There just hasn't been anything new happening, we are basically just waiting to be released now. Chris asked the doctor this morning when he thinks we'll be able to go home and he said maybe Monday, so we'll see...
Elijah is still playing like crazy and starting to be a real stinker again :-P Today he was pretty cranky, I can tell that he is more than ready to get out of here! He doesn't have much freedom to just go and do whatever he pleases. He's also cutting a tooth so he has been grumpy about that as well.
I forgot to mention the other day that he got his first vaccine ever. I'm not entirely happy about it, I still wasn't decided about whether I wanted to vaccinate him at all. However, after everything he's been through the doctors were really pushing it and I actually do agree with them that in his case, he will most likely benefit from them. He didn't get sick from anything that we could have vaccinated him for, but it is just scary to us and to the doctors that he got so sick, so fast. So we hope to be a little more prepared if at all possible for future problems. I still don't like the idea of vaccines and I'm not going to do all of them. This is a personal choice, some people might criticize me, but I have to do what I think is best for my child.
He's doing a lot better with his physical therapy, getting really close to where he was before he got sick. Not walking yet, and still a little unsteady on his feet, but he can pull himself up and stand for a little while. I am amazed at how quickly he is progressing. I don't think any adult could bounce back as quickly as this little kiddo. Even after my c-section I don't think I recovered this quickly! He's so strong and so brave, it just melts my heart.
We are really getting anxious to get out of the hospital now. It wasn't so bad before since we didn't know when he would recover. But now that he is doing so well and we know that he is healthy enough to go home, it is so frustrating to be stuck here! But the end is in sight and when that day does come, I have no idea how we are going to pack up all the food and clothes and food and toys and food and books and food we have here!!! Did I mention we have a lot of food :-P Thanks of course to the wonderful friends and even some new acquaintances from our church. We have been so well fed! We have also received numerous monetary gifts and we are so grateful for that as well. I hope to get out individual thank yous to all, but for now I just want to say, thank you so much!!! We are so blessed.
And of course, if I have not mentioned it before, we are so incredibly grateful for all the prayers and encouragement we have received. We ask that you continue to pray for Elijah and for us. We can never get enough! The Lord is so good and so faithful to answer our prayers!
I've noticed that adding pictures to my posts has been a real hit, so here's another one for you all. Here is Elijah getting a bath and discovering the greatness that is bubbles :-)
Elijah is still playing like crazy and starting to be a real stinker again :-P Today he was pretty cranky, I can tell that he is more than ready to get out of here! He doesn't have much freedom to just go and do whatever he pleases. He's also cutting a tooth so he has been grumpy about that as well.
I forgot to mention the other day that he got his first vaccine ever. I'm not entirely happy about it, I still wasn't decided about whether I wanted to vaccinate him at all. However, after everything he's been through the doctors were really pushing it and I actually do agree with them that in his case, he will most likely benefit from them. He didn't get sick from anything that we could have vaccinated him for, but it is just scary to us and to the doctors that he got so sick, so fast. So we hope to be a little more prepared if at all possible for future problems. I still don't like the idea of vaccines and I'm not going to do all of them. This is a personal choice, some people might criticize me, but I have to do what I think is best for my child.
He's doing a lot better with his physical therapy, getting really close to where he was before he got sick. Not walking yet, and still a little unsteady on his feet, but he can pull himself up and stand for a little while. I am amazed at how quickly he is progressing. I don't think any adult could bounce back as quickly as this little kiddo. Even after my c-section I don't think I recovered this quickly! He's so strong and so brave, it just melts my heart.
We are really getting anxious to get out of the hospital now. It wasn't so bad before since we didn't know when he would recover. But now that he is doing so well and we know that he is healthy enough to go home, it is so frustrating to be stuck here! But the end is in sight and when that day does come, I have no idea how we are going to pack up all the food and clothes and food and toys and food and books and food we have here!!! Did I mention we have a lot of food :-P Thanks of course to the wonderful friends and even some new acquaintances from our church. We have been so well fed! We have also received numerous monetary gifts and we are so grateful for that as well. I hope to get out individual thank yous to all, but for now I just want to say, thank you so much!!! We are so blessed.
And of course, if I have not mentioned it before, we are so incredibly grateful for all the prayers and encouragement we have received. We ask that you continue to pray for Elijah and for us. We can never get enough! The Lord is so good and so faithful to answer our prayers!
I've noticed that adding pictures to my posts has been a real hit, so here's another one for you all. Here is Elijah getting a bath and discovering the greatness that is bubbles :-)
Friday, September 25, 2009
Elijah in the Hospital
Here is a video I took just a few minutes ago of Elijah playing in his hospital bed. As you can see, he has no idea what happened in the last 3 weeks, praise the Lord! :-)
Thursday, September 24, 2009
September 24th
We had so many amazing accomplishments today! This morning Elijah could not quite totally hold his head up on his own, or sit on his own, or pull himself up, or stand. And by the end of the day he was doing all of those! He's sitting up in his crib right now playing with a puzzle, acting like nothing ever happened. It is absolutely amazing. He's not up and walking yet, and he can't stand without holding on to something, but with how quickly he has been progressing I don't think it will take long!
He's also eating normal meals now. Maybe not the huge amounts he did before (I'm guessing his stomach shrunk up a little bit since we've been here), but he's probably eating the regular one-year-old kid portions now :-P
The greatest news of all is that since Elijah was being so wild and crazy all day he was constantly setting off his monitors, so they took them off! They will put them back on at night, but they said there's no reason for him to have them on when he is awake and playful. Also, they took out his feeding tube since he's eating now! AND they unhooked his IV fluids from his PICC line! So the line is still in, but it's just taped down and he's not connected to anything. So now he can move around freely, which is GREAT because he was getting himself all tangled up :-P
So since he got completely unhooked this evening, we were able to take him outside of the room a little! We brought him down the hall to look at the fish tank, and into the playroom for a little while. We also brought him back upstairs to visit the doctors and nurses up in the PICU and they were all thrilled to see him. They were all talking about how unbelievable it is to see him looking well. One nurse even referred to him as the "miracle baby". It's clear to us that with the way the doctors and nurses talk about him, they didn't expect him to make it. So he truly is a "miracle baby," God most definitely worked a miracle in his life.
Praise the Lord, praise the Lord, praise the Lord for what he's done in our baby's life!
He's also eating normal meals now. Maybe not the huge amounts he did before (I'm guessing his stomach shrunk up a little bit since we've been here), but he's probably eating the regular one-year-old kid portions now :-P
The greatest news of all is that since Elijah was being so wild and crazy all day he was constantly setting off his monitors, so they took them off! They will put them back on at night, but they said there's no reason for him to have them on when he is awake and playful. Also, they took out his feeding tube since he's eating now! AND they unhooked his IV fluids from his PICC line! So the line is still in, but it's just taped down and he's not connected to anything. So now he can move around freely, which is GREAT because he was getting himself all tangled up :-P
So since he got completely unhooked this evening, we were able to take him outside of the room a little! We brought him down the hall to look at the fish tank, and into the playroom for a little while. We also brought him back upstairs to visit the doctors and nurses up in the PICU and they were all thrilled to see him. They were all talking about how unbelievable it is to see him looking well. One nurse even referred to him as the "miracle baby". It's clear to us that with the way the doctors and nurses talk about him, they didn't expect him to make it. So he truly is a "miracle baby," God most definitely worked a miracle in his life.
Praise the Lord, praise the Lord, praise the Lord for what he's done in our baby's life!
Wednesday, September 23, 2009
September 23rd
We are out of the PICU! Woop, woop! We moved down to the regular pediatrics floor at around 3:00 this afternoon. Our new room is much smaller, but it's kind of nice because now we can sit on the couch and be really close to Elijah, also we can see the tv :-P And this room has its own bathroom!
It feels so great to be out of the PICU, we feel like we've made a HUGE step towards recovery. Things are much more relaxed down here, we don't have a nurse sitting outside our door at all times, or coming in the room all the time to check everything. We can pick him up and hold him anytime we want, we don't have to ask permission or anything :-P We also got to give him a little food today. The speech pathologist came to look at him this afternoon and gave him some apple sauce and he took it great, so he told us that we can start him on a soft foods diet. So tonight he got some mashed potatoes and gravy and some cooked veggies. He was definitely enjoying having some food again. We are starting it off slow, so hopefully he will keep doing well with that.
He's also started talking more and his voice is getting better and better. And he's playing more than ever, as well. He wants us to read to him all the time! It's so funny, he will grab my hand and then put the book in it :-P What a goofball. He is also moving around like crazy, kicking his legs, trying to pull himself up on the crib rails (not succeeding), and he even rolled over today! He wants to get around so bad, but he gets all tangled in his tubes and wires. We're working on getting rid of those!
Here's a picture of Elijah feeling much better!
It feels so great to be out of the PICU, we feel like we've made a HUGE step towards recovery. Things are much more relaxed down here, we don't have a nurse sitting outside our door at all times, or coming in the room all the time to check everything. We can pick him up and hold him anytime we want, we don't have to ask permission or anything :-P We also got to give him a little food today. The speech pathologist came to look at him this afternoon and gave him some apple sauce and he took it great, so he told us that we can start him on a soft foods diet. So tonight he got some mashed potatoes and gravy and some cooked veggies. He was definitely enjoying having some food again. We are starting it off slow, so hopefully he will keep doing well with that.
He's also started talking more and his voice is getting better and better. And he's playing more than ever, as well. He wants us to read to him all the time! It's so funny, he will grab my hand and then put the book in it :-P What a goofball. He is also moving around like crazy, kicking his legs, trying to pull himself up on the crib rails (not succeeding), and he even rolled over today! He wants to get around so bad, but he gets all tangled in his tubes and wires. We're working on getting rid of those!
Here's a picture of Elijah feeling much better!
Tuesday, September 22, 2009
September 22nd
Another great day today, Elijah was awake and playing practically all day! I think he might have taken a total of 2 hours in naps all day! It's so strange since he's been so out of it and sleepy until now. I guess he's trying to make up for all his lost time :-)
Since he's been more awake and playful, he is also starting to try talking a little more. His voice is still very raspy, but it is getting better and better. He's also moving around a lot more. The physical therapist came in today to take a look at him. She said he's doing great with his arms, but she wants him to start moving his legs a little more. So we need to rub them and help him exercise them a little bit. She also helped him sit up and work on his neck control. It's a little strange because he's almost like a little baby again, learning how to hold up his head and sit and roll over and such. It will probably be a while until he is fully recovered and walking around again. I'm assuming when we go down to the peds floor we will have more freedom for him to get out of the crib and work on moving around.
We held him some more today, which we love of course, but it also seems to get him worked up and it gets all the cords tangled and what not. So it is pretty difficult to hold him, and we are hoping he will have less attached him when we go to peds floor.
Speaking of going down to the peds floor, we may be going tomorrow, but that's not a guarantee. The doctors up here are being cautious with him because he is prone to crashing so quickly. But today he has been fantastic so we will see!
That's all for today, we are so thrilled to see our baby recovering and being himself! Keep the prayers coming, they are working! :-D
Since he's been more awake and playful, he is also starting to try talking a little more. His voice is still very raspy, but it is getting better and better. He's also moving around a lot more. The physical therapist came in today to take a look at him. She said he's doing great with his arms, but she wants him to start moving his legs a little more. So we need to rub them and help him exercise them a little bit. She also helped him sit up and work on his neck control. It's a little strange because he's almost like a little baby again, learning how to hold up his head and sit and roll over and such. It will probably be a while until he is fully recovered and walking around again. I'm assuming when we go down to the peds floor we will have more freedom for him to get out of the crib and work on moving around.
We held him some more today, which we love of course, but it also seems to get him worked up and it gets all the cords tangled and what not. So it is pretty difficult to hold him, and we are hoping he will have less attached him when we go to peds floor.
Speaking of going down to the peds floor, we may be going tomorrow, but that's not a guarantee. The doctors up here are being cautious with him because he is prone to crashing so quickly. But today he has been fantastic so we will see!
That's all for today, we are so thrilled to see our baby recovering and being himself! Keep the prayers coming, they are working! :-D
Holding my baby
Holding my baby for the first time in 15 long days!!!
I don't know why this picture insists on being sideways, it is facing the right way in the picture folder, oh well! Anyway, you can see Elijah's silly smile that I was talking about in my post yesterday :-)
Elijah and Daddy hanging out :-PMonday, September 21, 2009
September 21st (Part 2)
Elijah got the tube out today! We were so surprised because before they took him down we were told by several different people that they didn't expect to be able to extubate him yet. So we were still hoping and praying, but were prepared for him to come back up with the tube still in. But then one of the respiratory therapists came in and told us that they extubated him! They brought him back up and he was looking so great without all those tubes sticking in him! They put a mask on him that's giving him a helium/oxygen combination, but he is taking breaths all on his own and doing great! He is still very sick and still sounds very congested, but he can breathe! Praise the Lord!
So they expect to leave him on the helium/oxygen mix overnight at least. Then I asked when he would get the mask off and the nurse wasn't sure...
OK, I get distracted easily and left this post and since I stopped writing several things have happened! They took his mask off completely already tonight! His oxygen level has remained great and the doctor said he really doesn't need the mask on, so praise the Lord! We did have another little scare with his heart rate, it dropped down to 48 at one point, which is significantly low. And it had been in the 50's and 60's most of the evening, whereas it was around 120 just a couple days ago. So the doctors came in to look again and decided to run another EKG. I don't remember exactly what they said about it, but there was a small problem on the EKG, but both the doctors up here and the cardiologist both said that it was due to his breathing issues, so no worry there! The doctors are all guessing that the low heart rate is attributed to his drugs, he did get 3 at one time around 5pm and it was shortly after that that his heart rate started getting really low.
So they are going to watch him closely tonight and they have dropped one of his drugs completely (one that is known to lower heart rates) and are starting to taper the other ones again. But already since the scare he has woken up and his heart has picked up a little so it looks like the drugs are wearing off and he is doing ok.
So the best news of the evening is... I got to hold my baby! It has been 15 days since I held him last and I have just been aching to have him in my arms! So I sat in the recliner by the crib and the nurse handed him to me (he was sleeping at the time) and he just snuggled right into me and started waking up a little. Then he was just smiling, totally randomly, it was the cutest thing! He was just laying there, very peaceful, smiling at his mommy... We did get pictures which I will put up as soon as I can get them on our computer. While I was holding him he really woke up and was starting to point at stuff and tried to talk a little (his voice is very raspy), and even tried to get up and move around. That kid is ready to go! Daddy got to hold him too of course and we got some pictures of that as well. It was so amazing to hold our baby again!
Well that's all for tonight. All in all, it was a fantastic day today! Your prayers are definitely working! Now please pray that he continues to get better and doesn't take any backward steps. Also, please continue to pray for some answers. We didn't learn anything new today from the ENT guys, so we are still at a loss for what could have caused all of this. So keep the prayers coming, you all have been so amazing through all of this. We can never express how incredibly grateful we are. We love you all so much! Thank you!
So they expect to leave him on the helium/oxygen mix overnight at least. Then I asked when he would get the mask off and the nurse wasn't sure...
OK, I get distracted easily and left this post and since I stopped writing several things have happened! They took his mask off completely already tonight! His oxygen level has remained great and the doctor said he really doesn't need the mask on, so praise the Lord! We did have another little scare with his heart rate, it dropped down to 48 at one point, which is significantly low. And it had been in the 50's and 60's most of the evening, whereas it was around 120 just a couple days ago. So the doctors came in to look again and decided to run another EKG. I don't remember exactly what they said about it, but there was a small problem on the EKG, but both the doctors up here and the cardiologist both said that it was due to his breathing issues, so no worry there! The doctors are all guessing that the low heart rate is attributed to his drugs, he did get 3 at one time around 5pm and it was shortly after that that his heart rate started getting really low.
So they are going to watch him closely tonight and they have dropped one of his drugs completely (one that is known to lower heart rates) and are starting to taper the other ones again. But already since the scare he has woken up and his heart has picked up a little so it looks like the drugs are wearing off and he is doing ok.
So the best news of the evening is... I got to hold my baby! It has been 15 days since I held him last and I have just been aching to have him in my arms! So I sat in the recliner by the crib and the nurse handed him to me (he was sleeping at the time) and he just snuggled right into me and started waking up a little. Then he was just smiling, totally randomly, it was the cutest thing! He was just laying there, very peaceful, smiling at his mommy... We did get pictures which I will put up as soon as I can get them on our computer. While I was holding him he really woke up and was starting to point at stuff and tried to talk a little (his voice is very raspy), and even tried to get up and move around. That kid is ready to go! Daddy got to hold him too of course and we got some pictures of that as well. It was so amazing to hold our baby again!
Well that's all for tonight. All in all, it was a fantastic day today! Your prayers are definitely working! Now please pray that he continues to get better and doesn't take any backward steps. Also, please continue to pray for some answers. We didn't learn anything new today from the ENT guys, so we are still at a loss for what could have caused all of this. So keep the prayers coming, you all have been so amazing through all of this. We can never express how incredibly grateful we are. We love you all so much! Thank you!
September 21st
We are watching and waiting today to find out if Elijah will be able to go down to the OR. As far as I've heard, the OR is likely booked today and they would probably rather take him tomorrow. However, our doctor up here is pushing as hard as he can to get them to fit Elijah in today. So we really have no idea if he will go down today or what time it would be. But we really want him to go down today!
If he gets to go down to the OR, the ENT's are going to stick a scope down his throat and really get a good look at everything that's going on down there. Then they will decide whether it is safe to extubate him and if so, they will do that in the OR. So it will be a much more controlled environment and we won't have the problems we had on Friday.
So we just ask for your prayers today, first that Elijah will get taken to the OR today, that they will get a good look at everything and find some answers for us, and that it will be safe to extubate and the entire procedure will go fantastic! And then after all that, please pray that he will heal quickly and not have any more complications!
Another thing you can pray for is peace for Elijah. We've had to request extra sedation because he's been having a really difficult time the last couple days. He's clearly sick of being sick and having all the tubes and being strapped to the bed. He's been crying a lot and that just irritates his throat even more so we would much rather he is just able to sleep through all of this right now. Since we don't have much longer to wait before they extubate (hopefully) we want to keep him calm a little bit longer.
OK, speaking of hopefully getting into the OR today... Our nurse just walked in and said that the OR called and said they will be here to bring him down in about an hour! Praise the Lord! We've learned since we've been here that hospital time doesn't always correlate with regular time, so an hour is just a rough estimate... But it is great that they plan on taking him!!!
Please pray today, it is a big day!!! I will update later to let everyone know how things went. Please pray!!!
If he gets to go down to the OR, the ENT's are going to stick a scope down his throat and really get a good look at everything that's going on down there. Then they will decide whether it is safe to extubate him and if so, they will do that in the OR. So it will be a much more controlled environment and we won't have the problems we had on Friday.
So we just ask for your prayers today, first that Elijah will get taken to the OR today, that they will get a good look at everything and find some answers for us, and that it will be safe to extubate and the entire procedure will go fantastic! And then after all that, please pray that he will heal quickly and not have any more complications!
Another thing you can pray for is peace for Elijah. We've had to request extra sedation because he's been having a really difficult time the last couple days. He's clearly sick of being sick and having all the tubes and being strapped to the bed. He's been crying a lot and that just irritates his throat even more so we would much rather he is just able to sleep through all of this right now. Since we don't have much longer to wait before they extubate (hopefully) we want to keep him calm a little bit longer.
OK, speaking of hopefully getting into the OR today... Our nurse just walked in and said that the OR called and said they will be here to bring him down in about an hour! Praise the Lord! We've learned since we've been here that hospital time doesn't always correlate with regular time, so an hour is just a rough estimate... But it is great that they plan on taking him!!!
Please pray today, it is a big day!!! I will update later to let everyone know how things went. Please pray!!!
Sunday, September 20, 2009
My sweet boy
I thought some of you might want a picture of Elijah, so my sister took one yesterday while he was doing really well and smiling and playing. So here is a picture of Elijah on his hospital bed, tubes and all. You can tell by his little grin that he is being a real trooper through all of this.
Saturday, September 19, 2009
September 19th
Elijah is getting his bath right now from the nurse with the assistance of Daddy and auntie Carrie, so I figured I should take this opportunity to update. He did pretty good today, was awake quite a bit and playing and smiling, it was so amazing. Last night after I posted and before we went to bed his heartrate was really low and we were a little concerned, but the doctors took a look at it and said it may just be because of all the trauma during the day, he was just in a really deep sleep. They also noticed on the monitor that his heart was skipping a beat sometimes so they decided to do an EKG, but that turned out normal, so no worries there.
So today he played a lot and slept a lot and basically just hung out. The ENT people came to talk to us and said that they plan on taking him down to the OR on Monday hopefully and taking a look at him down there. They will decide then and there whether or not he can be extubated yet or not. Our doctor up here is anxious to get him extubated, because it's not good to have the tube in there for long periods of time. Obviously they won't do it if he's not ready, but we are all hoping he will be ready.
They took him on a little ride down the hall and downstairs today to get a CT scan. He was pretty interested to watch the hallway go by, considering he hasn't been out of his room in 13 days. So we got the CT scan in hopes that it might show the doctors something new, but as far as they can tell, it didn't. They said that the radiologists will take a look at it later, but they didn't find anything they didn't already know. No answers yet.
So Elijah is on steroids now to help the swelling in his throat and they said today that they could hear a leak in his tube, which means that his airway is larger than the tube and he is breathing outside of it a little, which is good news. That means the swelling has gone down a little. When they extubated him the first time, there was no leak. So this is good progress so far. But I can only imagine how swollen he is and how long it will take to heal all the damage. On Monday (hopefully) we will have a better idea.
One hard thing about today is that he is starting to get pretty emotional. He is definitely sick of being sick and having the tube in and everything. He is especially upset if I walk away from him. Sometimes even when he can't see me and he hears my voice he will start crying. A couple times he's also tried to put his arms out for me to pick him up. It's absolutely heartbreaking. I want to hold him so badly, and just somehow let him know that he's going to be ok. It's so awful when he cries because he can't make any noise, but you know he is trying so hard.
I forgot to mention in the last few posts that Chris and I did get a room in the Rossi house, which is right here in the hospital. It has been great to have such easy access to our room, so we can stay with Elijah a little later at night and come back a little earlier in the morning. Also if either of us needs a break during the afternoon we don't have to go far.
We are just so happy that he is awake and playing and being himself. The nurses and doctors are just amazed at how well behaved he is. A lot of kids can't be awake while they are intubated, but he has just been a champ. It's so clear that he is covered in prayer! And Chris and I as well! We definitely have our weak moments, but we have just been amazed by the peace that we feel. We know that this whole situation is in God's hands and we know that He loves Elijah even more than we do! We are absolutely trusting in God to take care of our baby. He has already come so much farther than the doctors expected, we are thrilled by his progress. It's hard to see him slip up sometimes and it's hard to sit and wait, but we know God is working, and His timing is not the same as our timing.
Please continue praying, don't forget about us! We are proud to say that we have the most amazing and faithful family and friends. We love and appreciate you all more than you know! Please pray for complete healing and for answers!
So today he played a lot and slept a lot and basically just hung out. The ENT people came to talk to us and said that they plan on taking him down to the OR on Monday hopefully and taking a look at him down there. They will decide then and there whether or not he can be extubated yet or not. Our doctor up here is anxious to get him extubated, because it's not good to have the tube in there for long periods of time. Obviously they won't do it if he's not ready, but we are all hoping he will be ready.
They took him on a little ride down the hall and downstairs today to get a CT scan. He was pretty interested to watch the hallway go by, considering he hasn't been out of his room in 13 days. So we got the CT scan in hopes that it might show the doctors something new, but as far as they can tell, it didn't. They said that the radiologists will take a look at it later, but they didn't find anything they didn't already know. No answers yet.
So Elijah is on steroids now to help the swelling in his throat and they said today that they could hear a leak in his tube, which means that his airway is larger than the tube and he is breathing outside of it a little, which is good news. That means the swelling has gone down a little. When they extubated him the first time, there was no leak. So this is good progress so far. But I can only imagine how swollen he is and how long it will take to heal all the damage. On Monday (hopefully) we will have a better idea.
One hard thing about today is that he is starting to get pretty emotional. He is definitely sick of being sick and having the tube in and everything. He is especially upset if I walk away from him. Sometimes even when he can't see me and he hears my voice he will start crying. A couple times he's also tried to put his arms out for me to pick him up. It's absolutely heartbreaking. I want to hold him so badly, and just somehow let him know that he's going to be ok. It's so awful when he cries because he can't make any noise, but you know he is trying so hard.
I forgot to mention in the last few posts that Chris and I did get a room in the Rossi house, which is right here in the hospital. It has been great to have such easy access to our room, so we can stay with Elijah a little later at night and come back a little earlier in the morning. Also if either of us needs a break during the afternoon we don't have to go far.
We are just so happy that he is awake and playing and being himself. The nurses and doctors are just amazed at how well behaved he is. A lot of kids can't be awake while they are intubated, but he has just been a champ. It's so clear that he is covered in prayer! And Chris and I as well! We definitely have our weak moments, but we have just been amazed by the peace that we feel. We know that this whole situation is in God's hands and we know that He loves Elijah even more than we do! We are absolutely trusting in God to take care of our baby. He has already come so much farther than the doctors expected, we are thrilled by his progress. It's hard to see him slip up sometimes and it's hard to sit and wait, but we know God is working, and His timing is not the same as our timing.
Please continue praying, don't forget about us! We are proud to say that we have the most amazing and faithful family and friends. We love and appreciate you all more than you know! Please pray for complete healing and for answers!
Friday, September 18, 2009
September 18th
Today was a really hard day. We took one step forward and two steps back... He was doing great all morning and they decided to extubate him. We were all excited, Chris and I, the doctors, the nurses, the respiratory therapists... Everybody thought he was doing great and we were all excited to get that tube out!
So sometime in the afternoon they went ahead and did the extubation. The tube came out quick and Elijah coughed a little, but he couldn't really cry, he just made a squeaky noise. They put a nasal cannula in to give him extra oxygen and let him try to breathe on his own. He was working really hard at it, breathing in, but having a really hard time exhaling. He was still pretty worked up from everything, so the doctor said to let him calm down and rest a little and see if his breathing got better. So they let him sit for a while and he was continuing to struggle. Then his oxygen stats started to go down and the nurse went to get the doctor who came back in and held a breathing mask over his mouth and nose. Then they were commenting on how hard his chest was retracting and everything started getting crazy after that.
They called in a ton of people, there were probably 15-20 doctors and nurses in here and everyone was surrounding him. They knew they had to reintubate him because he wasn't getting enough oxygen and so they were trying to look down his throat, but they couldn't see through because it was swollen shut. They had the ENT (ear, nose, and throat) people come up so they could see him, but they didn't get much of a chance to see what was going on down there because his heart rate and oxygen started dropping severely. Then they started giving him CPR and at that point I had to look away. The worst thing I have ever seen and can ever imagine seeing is my son lying motionless on a hospital bed with 15 doctors surrounding him and getting his chest pounded on while people yelled out his stats.
I completely broke down at that point, my head was in Chris' chest and I was crying and calling out to Jesus to please save my son over and over. Then Chris started telling me that his stats were coming back up, he was gonna be ok...
The doctors managed to get him reintubated and stabilized and the catastrophe passed. They did an x-ray right away to see how his lungs held up during the whole ordeal, and they looked ok. About the same as they did before I think, not too much worse. I was afraid they may have collapsed again with all the trauma, but thankfully they were still doing ok. So now the big problem is not with his lungs, but with his throat and vocal chords. Apparently his throat is almost completely swollen shut, this could be for a number of reasons. Also, his vocal chords are stretched as tight as they go and they're not sure how much damage there is. So he does have to be intubated for a little while longer. They are putting him on steroids now to reduce the swelling and hope to be able to extubate him again in a few days. This time when they extubate, the ENT people will do it. They came to talk to us and said they may even take him down to the OR (operating room) so they can really look in there and see what's going on. So this time we really have the specialists working on it.
Also, our doctor stopped back in a little while ago to listen to his chest and said that he is wheezing quite a bit. I asked her what that tells her and she said it means there is probably airway obstruction in the lower airways and not just the throat. Then she said that she is pretty sure that there is something going on in there that they just don't understand. So we are still sitting in a place with no answers. They don't know why his lungs failed, they don't know why his throat swelled shut, they don't know why there is restriction in his lower airways.
He is doing ok now, breathing with the ventilator and keeping his stats up. He's totally out right now, they had to give him sedation and a paralytic when they reintubated him. The paralytic's worn off already, but he is still pretty conked out. He is moving a little and opening his eyes every now and then, but he is just exhausted from the whole ordeal. He should be able to be awake and moving like he was before all this, just mildly sedated. So we are sort of back to where we were yesterday, except we are furthur away from recovery now.
We need your prayers more than ever. This whole process has been extremely difficult and stressful. We just want to know what is happening to our little boy. We obviously want him to fully recover, but we don't want to leave the hospital without knowing what is going on! Please, please, please pray that the doctors will find answers to everything that is going on. And please pray that God will heal our baby totally and completely.
So sometime in the afternoon they went ahead and did the extubation. The tube came out quick and Elijah coughed a little, but he couldn't really cry, he just made a squeaky noise. They put a nasal cannula in to give him extra oxygen and let him try to breathe on his own. He was working really hard at it, breathing in, but having a really hard time exhaling. He was still pretty worked up from everything, so the doctor said to let him calm down and rest a little and see if his breathing got better. So they let him sit for a while and he was continuing to struggle. Then his oxygen stats started to go down and the nurse went to get the doctor who came back in and held a breathing mask over his mouth and nose. Then they were commenting on how hard his chest was retracting and everything started getting crazy after that.
They called in a ton of people, there were probably 15-20 doctors and nurses in here and everyone was surrounding him. They knew they had to reintubate him because he wasn't getting enough oxygen and so they were trying to look down his throat, but they couldn't see through because it was swollen shut. They had the ENT (ear, nose, and throat) people come up so they could see him, but they didn't get much of a chance to see what was going on down there because his heart rate and oxygen started dropping severely. Then they started giving him CPR and at that point I had to look away. The worst thing I have ever seen and can ever imagine seeing is my son lying motionless on a hospital bed with 15 doctors surrounding him and getting his chest pounded on while people yelled out his stats.
I completely broke down at that point, my head was in Chris' chest and I was crying and calling out to Jesus to please save my son over and over. Then Chris started telling me that his stats were coming back up, he was gonna be ok...
The doctors managed to get him reintubated and stabilized and the catastrophe passed. They did an x-ray right away to see how his lungs held up during the whole ordeal, and they looked ok. About the same as they did before I think, not too much worse. I was afraid they may have collapsed again with all the trauma, but thankfully they were still doing ok. So now the big problem is not with his lungs, but with his throat and vocal chords. Apparently his throat is almost completely swollen shut, this could be for a number of reasons. Also, his vocal chords are stretched as tight as they go and they're not sure how much damage there is. So he does have to be intubated for a little while longer. They are putting him on steroids now to reduce the swelling and hope to be able to extubate him again in a few days. This time when they extubate, the ENT people will do it. They came to talk to us and said they may even take him down to the OR (operating room) so they can really look in there and see what's going on. So this time we really have the specialists working on it.
Also, our doctor stopped back in a little while ago to listen to his chest and said that he is wheezing quite a bit. I asked her what that tells her and she said it means there is probably airway obstruction in the lower airways and not just the throat. Then she said that she is pretty sure that there is something going on in there that they just don't understand. So we are still sitting in a place with no answers. They don't know why his lungs failed, they don't know why his throat swelled shut, they don't know why there is restriction in his lower airways.
He is doing ok now, breathing with the ventilator and keeping his stats up. He's totally out right now, they had to give him sedation and a paralytic when they reintubated him. The paralytic's worn off already, but he is still pretty conked out. He is moving a little and opening his eyes every now and then, but he is just exhausted from the whole ordeal. He should be able to be awake and moving like he was before all this, just mildly sedated. So we are sort of back to where we were yesterday, except we are furthur away from recovery now.
We need your prayers more than ever. This whole process has been extremely difficult and stressful. We just want to know what is happening to our little boy. We obviously want him to fully recover, but we don't want to leave the hospital without knowing what is going on! Please, please, please pray that the doctors will find answers to everything that is going on. And please pray that God will heal our baby totally and completely.
Thursday, September 17, 2009
September 17th
Not too much new today. Still weaning Elijah off the ventilator little by little. He was a little bit more awake and playful today. We are just shocked at how well he is behaving considering all the tubes that are in him. I fully expected him to be trying to rip them out constantly, but he doesn't seem to notice them all that much (which I believe is due to all your prayers). He does have his moments when he gets frustrated with the tubes and mostly with his restraints, but he gets over it pretty quickly.
We were a little disappointed that they didn't extubate him today, but at the same time we would rather be safe than sorry. They are totally impressed by how great he is doing, so there isn't much holding them back, they are just taking it really slow and being overly cautious. So they said maybe tomorrow they will extubate him... And with the way things looked today I don't see why they wouldn't. So here's hoping!
Sorry for the short update, but like I said, nothing new really. We are just waiting for the big day when he is set free from all his tubes and restraints! Really hoping it will be tomorrow, we will keep everyone updated! Please keep praying!
We were a little disappointed that they didn't extubate him today, but at the same time we would rather be safe than sorry. They are totally impressed by how great he is doing, so there isn't much holding them back, they are just taking it really slow and being overly cautious. So they said maybe tomorrow they will extubate him... And with the way things looked today I don't see why they wouldn't. So here's hoping!
Sorry for the short update, but like I said, nothing new really. We are just waiting for the big day when he is set free from all his tubes and restraints! Really hoping it will be tomorrow, we will keep everyone updated! Please keep praying!
Wednesday, September 16, 2009
September 16th
Today was definitely our best day yet! Elijah is continuing to get better. Today he was awake for long periods at a time and was able to make eye contact with us, still pretty hazy, but eye contact nonetheless. He would also follow us with his eyes and look at different things and try to reach for them. He could grab onto some things, but his arms are pretty weak, plus he is restrained a little so he doesn't grab his breathing tube. We mostly just stood by him and talked to him, we even read him a few books and he just watched the pages go by and listened and sometimes tried to reach for them.
The absolute best part of the day was when Elijah smiled at us. We were playing peek-a-boo with his blanket and he couldn't help but give us a big smile. It looked pretty silly with the tubes coming out of his nose and mouth, but it was still the most wonderful thing I've seen since we've been here. Plus he was starting to act more like himself, he waved at us a little bit, and rubbed his head, and pointed at things... It was so precious to see him being himself again.
He's completely off his long-term sedatives, right now he is just on temporary ones that will fade away quickly after they are stopped. They are also doing test-runs where they turn off part of the ventilator to see if he can take breaths on his own. So far he has done great with those tests. It is possible that they will be able to take him off the ventilator sometime tomorrow! We are trying not to get our hopes up though, so we are expecting that it will be out by Friday for sure (if everything continues to go well).
Again, we are just amazed by his progress. Our little guy is coming back! Your prayers have made all the difference, please keep them coming! I am staying in the hospital overnights from now on since he is waking up, so I better get going and try to get some sleep! I will update tomorrow, please keep praying! God is so good! Thank you so much!
The absolute best part of the day was when Elijah smiled at us. We were playing peek-a-boo with his blanket and he couldn't help but give us a big smile. It looked pretty silly with the tubes coming out of his nose and mouth, but it was still the most wonderful thing I've seen since we've been here. Plus he was starting to act more like himself, he waved at us a little bit, and rubbed his head, and pointed at things... It was so precious to see him being himself again.
He's completely off his long-term sedatives, right now he is just on temporary ones that will fade away quickly after they are stopped. They are also doing test-runs where they turn off part of the ventilator to see if he can take breaths on his own. So far he has done great with those tests. It is possible that they will be able to take him off the ventilator sometime tomorrow! We are trying not to get our hopes up though, so we are expecting that it will be out by Friday for sure (if everything continues to go well).
Again, we are just amazed by his progress. Our little guy is coming back! Your prayers have made all the difference, please keep them coming! I am staying in the hospital overnights from now on since he is waking up, so I better get going and try to get some sleep! I will update tomorrow, please keep praying! God is so good! Thank you so much!
Tuesday, September 15, 2009
September 15th
Today we had some good news and some bad news. Bad news first, they got the test results for H1N1 back and it was negative. Great that he doesn't have H1N1, but that means the doctors have reached a complete dead end. They've tested him for everything they would expect it to be. And now it is basically too late to run any more tests because whatever the virus may have been, it is gone now. I'm not sure if there are any paths the doctors are planning to take to find out what the problem was, but they haven't indicated any other plans. Thankfully we are at a research hospital so this is the best place to be in this situation, but that doesn't guarantee anything. I just know as Elijah's mom, if I take him home without ever knowing what caused this I will have no idea how to prevent it and that is extremely frightening for me. Considering how fast this escalated, I never want to be anywhere close to this situation again.
The good news I have is great news! They've started to wean his ventilator and his sedation and it looks like it may go quicker than we originally expected. They've been working on weaning both all day and our nurse told us tonight if things continue as they are they may have him weaned off of sedation by tomorrow night and then extubated (taken off the ventilator) by Thursday morning. That is such an encouragement! Every time they give us an original time frame, Elijah has just blown them away with how quickly he is improving. We know that is totally due to God's power and everyone's prayers. Have I mentioned how incredibly thankful we are?!? I don't think I can ever say it enough!
Today we got to see Elijah a little bit more awake at some moments. He was responding to our voices and looking towards us, but still couldn't focus his eyes at all. But let me tell you, after having our son in an induced coma for 9 days, even the smallest movement is so amazing to us. We are so excited for tomorrow and hoping that bit by bit he will be more and more aware of what's going on. Just to make eye contact with him is the best thing I can imagine right now.
We are thrilled by his improvement, but there is still a lot to get through. Please continue to remember him in your prayers. And right now please pray for the doctors that they will be able to discover what has caused all of this. Thank you!
The good news I have is great news! They've started to wean his ventilator and his sedation and it looks like it may go quicker than we originally expected. They've been working on weaning both all day and our nurse told us tonight if things continue as they are they may have him weaned off of sedation by tomorrow night and then extubated (taken off the ventilator) by Thursday morning. That is such an encouragement! Every time they give us an original time frame, Elijah has just blown them away with how quickly he is improving. We know that is totally due to God's power and everyone's prayers. Have I mentioned how incredibly thankful we are?!? I don't think I can ever say it enough!
Today we got to see Elijah a little bit more awake at some moments. He was responding to our voices and looking towards us, but still couldn't focus his eyes at all. But let me tell you, after having our son in an induced coma for 9 days, even the smallest movement is so amazing to us. We are so excited for tomorrow and hoping that bit by bit he will be more and more aware of what's going on. Just to make eye contact with him is the best thing I can imagine right now.
We are thrilled by his improvement, but there is still a lot to get through. Please continue to remember him in your prayers. And right now please pray for the doctors that they will be able to discover what has caused all of this. Thank you!
Monday, September 14, 2009
September 14th
Another big step today for Elijah! Step by step is how we're getting there, today they took him off of his paralytics. So he was still heavily sedated, but he was able to move around quite a bit. He was moving his head back and forth and waving his arms around a little bit, and adjusting his legs. It was so great to see! The nurse even had to restrain his arms a little bit, she didn't expect him to be as strong as he was and was afraid he might reach up and grab his breathing tube.
They told us that he might be able to open his eyes a little and he did open them just barely earlier in the day, but he was still totally out, we could tell because his pupils were really small. But just a little while ago this evening he was even waking up a little bit and opening his eyes and looking around. His pupils were dilated a little bit, but he wasn't able to focus on anything. So he didn't look right at us, but it was encouraging just to know he was a little bit awake and could look around a little. I don't know exactly when they plan on lowering his sedatives so I'm not sure how long we will have to wait until he is awake enough to respond to us.
It's still going to be a step-by-step process of slowly weaning the ventilator and slowly weaning the sedation. The big thing we are waiting on now is still the H1N1 test results. That is the only test left so we are all sort of hoping it comes back positive so we will at least KNOW what is going on.
Now that Elijah is waking up a little we are spending our days in his room so we can be close. This means that we can't have any cell phones on because they can interfere with the ventilator. If anyone needs to get a hold of us we check our email and facebooks often and the phone number for our room is 319-353-9747. We also step out and check our voicemail when we get a chance. For those interested in visiting, you are still more than welcome to, but we are now in his room instead of the family lounge.
That is all for tonight, I will keep the updates coming, please keep the prayers coming!
They told us that he might be able to open his eyes a little and he did open them just barely earlier in the day, but he was still totally out, we could tell because his pupils were really small. But just a little while ago this evening he was even waking up a little bit and opening his eyes and looking around. His pupils were dilated a little bit, but he wasn't able to focus on anything. So he didn't look right at us, but it was encouraging just to know he was a little bit awake and could look around a little. I don't know exactly when they plan on lowering his sedatives so I'm not sure how long we will have to wait until he is awake enough to respond to us.
It's still going to be a step-by-step process of slowly weaning the ventilator and slowly weaning the sedation. The big thing we are waiting on now is still the H1N1 test results. That is the only test left so we are all sort of hoping it comes back positive so we will at least KNOW what is going on.
Now that Elijah is waking up a little we are spending our days in his room so we can be close. This means that we can't have any cell phones on because they can interfere with the ventilator. If anyone needs to get a hold of us we check our email and facebooks often and the phone number for our room is 319-353-9747. We also step out and check our voicemail when we get a chance. For those interested in visiting, you are still more than welcome to, but we are now in his room instead of the family lounge.
That is all for tonight, I will keep the updates coming, please keep the prayers coming!
Sunday, September 13, 2009
September 13th
Today we had another big accomplishment for Elijah. He was switched off of the heavy-duty ventilator which was putting very quick, short breaths into him, and now we are on the regular ventilator which does long, slow breaths. This machine resembles actual breathing patterns. So now we are just working on weaning him off of this machine and making sure he is able to breathe on his own again. I asked for an estimated time and the nurse said it totally depends on him, but she would guess about a week left on this machine.
The only negative thing today was that his CO2 output is kind of high, and got higher when they put him on the regular ventilator. However, since everything else for him is looking great, they are just going to accept this high level as sort of normal for him and keep him as he is unless it gets any worse. I asked what it meant when the CO2 output was high and I'm still not totally understanding it, but it gives an indication that there may be some collapse in the lung or mucus blockage which is preventing him from exhaling well.
He is up to full feedings now through the feeding tube in his nose, which means he's not taking any nutrition intravenously, so they've cut down on his IV fluids. This also means he is not as swollen as he was and he looks much better! They've also been moving him around more to keep him comfortable.
Again, we are just in a waiting period. So I will continue to update whenever anything changes. Please continue to pray. We have not defeated this yet. I've heard people asking what they can pray for specifically right now and besides praying for quick healing we ask that you pray for answers. Pray that the doctors will be able to figure out what caused all of this so that they will know exactly how to treat it, and hopefully so we will know how to prevent it in the future. Thank you so much! Please keep the prayers and the encouragement coming! God bless!
The only negative thing today was that his CO2 output is kind of high, and got higher when they put him on the regular ventilator. However, since everything else for him is looking great, they are just going to accept this high level as sort of normal for him and keep him as he is unless it gets any worse. I asked what it meant when the CO2 output was high and I'm still not totally understanding it, but it gives an indication that there may be some collapse in the lung or mucus blockage which is preventing him from exhaling well.
He is up to full feedings now through the feeding tube in his nose, which means he's not taking any nutrition intravenously, so they've cut down on his IV fluids. This also means he is not as swollen as he was and he looks much better! They've also been moving him around more to keep him comfortable.
Again, we are just in a waiting period. So I will continue to update whenever anything changes. Please continue to pray. We have not defeated this yet. I've heard people asking what they can pray for specifically right now and besides praying for quick healing we ask that you pray for answers. Pray that the doctors will be able to figure out what caused all of this so that they will know exactly how to treat it, and hopefully so we will know how to prevent it in the future. Thank you so much! Please keep the prayers and the encouragement coming! God bless!
Saturday, September 12, 2009
September 12th
Nothing but good news today! Everything is looking good, and he is improving quickly. God is so good and the power of prayer is truly awesome!
We walked into his room this morning to discover they had removed some mattresses to lower his bed a little (he had been raised rather high because it helps with the blood flow through the ECMO, but that wasn't necessary anymore). They had also changed his sheets and blankets which are now covered in Hawkeye logos. For those of you who don't know, the Hawkeye's are the U of I football team and being a fan of them is practically a religion for this side of the state of Iowa. And considering we are in the U of I hospital and can see the stadium from Elijah's hospital room, it is a big deal...
So we spent our day wandering back and forth between Elijah's room and the waiting room. We've been spending most of our time on the couches there, using the computer, reading, doing crossword puzzles, etc... Today however we had a little excitement with the Hawkeye game on in the morning. It was funny how when the game came on all the families gathered together in the lounge to watch it and everything seemed to be normal for a little while...
The days are seeming to go by a lot slower lately. The first few days we were in the hospital were so hectic we had a hard time keeping our heads on. But now that we are in the waiting period we have been getting a little restless. We are just so anxious for Elijah to be able to wake up and respond to us. We miss him so badly, there aren't even words.
Like I said, things are continuing to improve. They lowered his ventilator today and he did great with that. They will probably lower it a little more tomorrow and see how he does. He's real close to being at the point where they can switch to the smaller ventilator. It sounds like that may be possible tomorrow or the next day, but we will see. Then I'm not sure how long he will be on that ventilator. Once he's off them altogether he will need to be in the PICU for 24 hours after that, and then he will be moved down to the regular pediatric unit.
Your prayers are making all the difference. His improvement is phenomenal. No one who saw him 5 days ago would have guessed that he would be where he is today. God is healing him miraculously fast and we are so thrilled and so grateful. Please keep praying!
We walked into his room this morning to discover they had removed some mattresses to lower his bed a little (he had been raised rather high because it helps with the blood flow through the ECMO, but that wasn't necessary anymore). They had also changed his sheets and blankets which are now covered in Hawkeye logos. For those of you who don't know, the Hawkeye's are the U of I football team and being a fan of them is practically a religion for this side of the state of Iowa. And considering we are in the U of I hospital and can see the stadium from Elijah's hospital room, it is a big deal...
So we spent our day wandering back and forth between Elijah's room and the waiting room. We've been spending most of our time on the couches there, using the computer, reading, doing crossword puzzles, etc... Today however we had a little excitement with the Hawkeye game on in the morning. It was funny how when the game came on all the families gathered together in the lounge to watch it and everything seemed to be normal for a little while...
The days are seeming to go by a lot slower lately. The first few days we were in the hospital were so hectic we had a hard time keeping our heads on. But now that we are in the waiting period we have been getting a little restless. We are just so anxious for Elijah to be able to wake up and respond to us. We miss him so badly, there aren't even words.
Like I said, things are continuing to improve. They lowered his ventilator today and he did great with that. They will probably lower it a little more tomorrow and see how he does. He's real close to being at the point where they can switch to the smaller ventilator. It sounds like that may be possible tomorrow or the next day, but we will see. Then I'm not sure how long he will be on that ventilator. Once he's off them altogether he will need to be in the PICU for 24 hours after that, and then he will be moved down to the regular pediatric unit.
Your prayers are making all the difference. His improvement is phenomenal. No one who saw him 5 days ago would have guessed that he would be where he is today. God is healing him miraculously fast and we are so thrilled and so grateful. Please keep praying!
September 11th
I know today is the 12th, but I never gave an update yesterday so I am just writing it a little bit late. That way if anything changes today I will update tonight as well.
So yesterday there weren't too many changes, his oxygen levels are remaining great. His CO2 output was a little high but they got that down and that has been totally fine since. His left leg was pretty swollen and they did an ultrasound to see if there were any clots, but they didn't find any in his leg except for a little one around the entry site for his arterial line, which is common. So they elevated his leg a little and that seemed to help. They also, later in the evening, put in a PICC line (peripherally inserted central catheter)to replace the arterial line in his left leg. Basically it's a catheter they put in his thigh and threaded it up to his heart, so it's a more central placement. This kind of a line can be left in for up to a month and there is a decreased chance of clots.
They also mentioned once that his liver was enlarged and they were watching that. They said that can happen often due to the pressure of the ECMO and other things they have been doing. So they don't seem too concerned about that. I asked this morning and they didn't have any new information for me.
We still haven't heard the results of the viral tests, but we did miss the rounds this morning, so we are hoping they have the results and we will find out this afternoon. (Just asked and they don't have any results yet today.)
Last night I was in the room with Elijah while they were placing the PICC line. They had a hard time getting it to work and had to poke him many times. They were concerned that I wouldn't be able to handle it and I was just thinking that it was nothing compared to watching the doctors desperately trying to get air in his lungs...
Also he was twitching quite a bit last night as his paralytics were wearing down a little bit. It was so precious to see his little toes wiggling. And then while I was holding his hand he would wiggle it every now and then. It was just great to be able to feel him move and know that he's doing ok in there. I am so excited for him to be awake again! They said that as he progresses they may be able to let him wake up a little, which means he will be able to open his eyes and look at us. That is fantastic! It's possible he won't be able to handle that and may resist the breathing tube, so they will have to see how it goes.
I think that's about all that's new for now. If anything happens today I will update later. But as I've said before, we are in a waiting period right now so we don't expect a lot of changes for a while now. But please, please, please keep Elijah in your prayers. We've been seeing miracles and we are still hoping for more. Your prayers have made all the difference, keep them coming!
So yesterday there weren't too many changes, his oxygen levels are remaining great. His CO2 output was a little high but they got that down and that has been totally fine since. His left leg was pretty swollen and they did an ultrasound to see if there were any clots, but they didn't find any in his leg except for a little one around the entry site for his arterial line, which is common. So they elevated his leg a little and that seemed to help. They also, later in the evening, put in a PICC line (peripherally inserted central catheter)to replace the arterial line in his left leg. Basically it's a catheter they put in his thigh and threaded it up to his heart, so it's a more central placement. This kind of a line can be left in for up to a month and there is a decreased chance of clots.
They also mentioned once that his liver was enlarged and they were watching that. They said that can happen often due to the pressure of the ECMO and other things they have been doing. So they don't seem too concerned about that. I asked this morning and they didn't have any new information for me.
We still haven't heard the results of the viral tests, but we did miss the rounds this morning, so we are hoping they have the results and we will find out this afternoon. (Just asked and they don't have any results yet today.)
Last night I was in the room with Elijah while they were placing the PICC line. They had a hard time getting it to work and had to poke him many times. They were concerned that I wouldn't be able to handle it and I was just thinking that it was nothing compared to watching the doctors desperately trying to get air in his lungs...
Also he was twitching quite a bit last night as his paralytics were wearing down a little bit. It was so precious to see his little toes wiggling. And then while I was holding his hand he would wiggle it every now and then. It was just great to be able to feel him move and know that he's doing ok in there. I am so excited for him to be awake again! They said that as he progresses they may be able to let him wake up a little, which means he will be able to open his eyes and look at us. That is fantastic! It's possible he won't be able to handle that and may resist the breathing tube, so they will have to see how it goes.
I think that's about all that's new for now. If anything happens today I will update later. But as I've said before, we are in a waiting period right now so we don't expect a lot of changes for a while now. But please, please, please keep Elijah in your prayers. We've been seeing miracles and we are still hoping for more. Your prayers have made all the difference, keep them coming!
Thursday, September 10, 2009
September 10th
Going to be a short one tonight, for some reason I can't pick up the internet on my laptop at the Ronald McDonald House, so I am on one of their computers, but would much rather be in bed right now...
So I just wanted to reiterate my posts on facebook today in case some of you didn't see them. This afternoon around 2:00 they went ahead with the surgery to take Elijah off of the ECMO, so they took the tube out of his neck and closed that hole and got the huge machine out of the room so he already looks better! The surgery was successful, they were a little concerned afterwards because he was putting out too much CO2 and they wanted to get that down, but it got better as the night went on. His oxygen levels remained great, so that was a huge deal!
So now he is on a bigger ventilator and they are going to work on weaning him off of that slowly and then they will place him on a smaller ventilator and wean that until he is breathing all on his own again. He will remain in an induced coma the entire time he's on the ventilator just because we know he will want to rip everything off of his face and out of his body as soon as he gets the chance... So the time period right now is looking like at least one week and I assume even after they get him off the ventilators it will still take some time to really make a full recovery.
They still do not know what caused this and that is the big question mark right now. We really need them to find out what it is so they can be sure that they are treating it correctly and making sure it is totally gone before they send us away. Also, so we will able to prevent this from happening again. They are still waiting on test results back, including a test for H1N1 which they weren't concerned about in the beginning, but they seem to be leaning towards lately, so we will see. No one we know has been infected at all so it will be quite a surprise if that is the case.
We've had lots of visitors and it has been wonderful. Our church sent out an email yesterday inviting everyone to come pray for us and we had quite a large group of people come by tonight and lay their hands on us and pray and it was so amazing. We are continually impressed every day by the love that has been shown to us and to Elijah. We cannot thank you enough. Please keep the prayers coming and the encouragement as well, it is such a blessing to us. Thank you!
So I just wanted to reiterate my posts on facebook today in case some of you didn't see them. This afternoon around 2:00 they went ahead with the surgery to take Elijah off of the ECMO, so they took the tube out of his neck and closed that hole and got the huge machine out of the room so he already looks better! The surgery was successful, they were a little concerned afterwards because he was putting out too much CO2 and they wanted to get that down, but it got better as the night went on. His oxygen levels remained great, so that was a huge deal!
So now he is on a bigger ventilator and they are going to work on weaning him off of that slowly and then they will place him on a smaller ventilator and wean that until he is breathing all on his own again. He will remain in an induced coma the entire time he's on the ventilator just because we know he will want to rip everything off of his face and out of his body as soon as he gets the chance... So the time period right now is looking like at least one week and I assume even after they get him off the ventilators it will still take some time to really make a full recovery.
They still do not know what caused this and that is the big question mark right now. We really need them to find out what it is so they can be sure that they are treating it correctly and making sure it is totally gone before they send us away. Also, so we will able to prevent this from happening again. They are still waiting on test results back, including a test for H1N1 which they weren't concerned about in the beginning, but they seem to be leaning towards lately, so we will see. No one we know has been infected at all so it will be quite a surprise if that is the case.
We've had lots of visitors and it has been wonderful. Our church sent out an email yesterday inviting everyone to come pray for us and we had quite a large group of people come by tonight and lay their hands on us and pray and it was so amazing. We are continually impressed every day by the love that has been shown to us and to Elijah. We cannot thank you enough. Please keep the prayers coming and the encouragement as well, it is such a blessing to us. Thank you!
Wednesday, September 9, 2009
September 9th
I planned on waiting until the evening to give my updates, but we have learned some new information that I want to share right away! During rounds this morning the doctors looked at an x-ray of his lungs and they have significantly improved. They are still not healthy, but there has been a pretty big change (due to the power of the prayers that have been offered on Elijah's behalf). So because his lungs are looking so much better they have decided to try to start taking him off the ECMO, which is a huge decision! Originally they planned on leaving him on this machine for 3-4 weeks while letting his lungs rest completely. They never did get him solely dependent on the machine, he has also been on a ventilator this entire time. So since his lungs seem to be doing some work they are going to see if they can do the job just with the ventilator.
So this morning they turned off the gas on the machine for a trial period. So the tube is still in his vein, pumping blood through the machine and back into his body, but the machine is not putting any oxygen in his blood. After this trial period they decided that he is doing just fine without it so they are planning to stop the blood flowing through the machine tomorrow sometime. If he does ok after that, they will take him off completely and remove the tubes from his neck. Then he would be relying on his own lungs as well as the respirator. This morning the doctor said best case scenario is that they will get him off the ECMO tomorrow and he will be on the respirator for at least a week still to recover.
Keep in mind they still have no idea what has caused his lung failure, so it is still very important that we find that out so they know how to treat it and prevent it from happening again. Also they are keeping him on the ventilator so he is still breathing with the help of a machine. It is great news that they are trying to take him off the ECMO, putting him on that has been the most concerning event so far. We are thrilled to know that he may do fine without it.
We are very excited and praising God for this news, but this is still a serious situation and we need your prayers to continue. Please pray that he does well being off the ECMO and that they are able to take him off of it completely by tomorrow as they plan. Also please pray that they can figure out what has caused this so they know how to treat it and we have an even faster recovery.
Thank you everyone for your prayers, God is so faithful! The doctors and nurses are very impressed by his improvement. I told our nurse that there are tons of people praying for him and I saw her tear up. God is showing and He's going to continue to show His power through this trial. Praise the Lord for everything He has done so far!
So this morning they turned off the gas on the machine for a trial period. So the tube is still in his vein, pumping blood through the machine and back into his body, but the machine is not putting any oxygen in his blood. After this trial period they decided that he is doing just fine without it so they are planning to stop the blood flowing through the machine tomorrow sometime. If he does ok after that, they will take him off completely and remove the tubes from his neck. Then he would be relying on his own lungs as well as the respirator. This morning the doctor said best case scenario is that they will get him off the ECMO tomorrow and he will be on the respirator for at least a week still to recover.
Keep in mind they still have no idea what has caused his lung failure, so it is still very important that we find that out so they know how to treat it and prevent it from happening again. Also they are keeping him on the ventilator so he is still breathing with the help of a machine. It is great news that they are trying to take him off the ECMO, putting him on that has been the most concerning event so far. We are thrilled to know that he may do fine without it.
We are very excited and praising God for this news, but this is still a serious situation and we need your prayers to continue. Please pray that he does well being off the ECMO and that they are able to take him off of it completely by tomorrow as they plan. Also please pray that they can figure out what has caused this so they know how to treat it and we have an even faster recovery.
Thank you everyone for your prayers, God is so faithful! The doctors and nurses are very impressed by his improvement. I told our nurse that there are tons of people praying for him and I saw her tear up. God is showing and He's going to continue to show His power through this trial. Praise the Lord for everything He has done so far!
Tuesday, September 8, 2009
September 8th
There hasn't been any change in Elijah's condition today. They took one x-ray of his lungs in the morning and it was the same as the previous ones. They were discussing taking another one this evening, but decided that it wouldn't be much extra help, plus they don't want to move him if they don't have to, so they are going to wait until the morning. They are definitely taking an x-ray every morning. They let us listen in during their rounds every morning so I stood there while they talked and it sounds like they aren't really going to do much of anything right now. They are monitoring everything and adjusting small things such as drug doses and feeding doses and body temperature and such. Other than that they haven't done anything different today. Just watching and waiting and seeing what happens.
The doctors are still stumped at this point. I believe there are more test results that haven't come back yet, they said they would let us know when they learn anything. I'm sure we will find out anything there is to find out tomorrow morning at rounds.
The last 2 nights Chris and I slept on some couches in the family lounge at the hospital but tonight we have gotten a room at Ronald McDonald House, which is only a few blocks from the hospital. We will be staying here for a while, but we are on a waiting list to get into the Rossi House, which is a similar facility that is located inside the hospital. That way we will have a private area to sleep and shower and rest during the times we are not with Elijah. We are looking forward to that so we can be in the same building with him. Even though there is nothing we can do and there is no way to interact with him, it is still incredibly difficult to be away from him.
We have gotten so much encouragement and support from friends and family, we are just overwhelmed. Please continue to pray and even though we don't get a chance to respond to everyone's messages, trust me when I say that we are incredibly grateful for each and every one. Every little bit of encouragement helps us, and every person who says they are praying for us is an incredible blessing.
Anyone who is in the area, feel free to visit. We love having visitors. Elijah is in the Pediatric ICU, 7th floor, in room 3. We are usually in the family lounge down the hall.
I keep thinking I should write about how Chris and I are feeling, but I just can't find the words. We are resting in God's faithfulness and trusting Him. There are many scriptures people have sent us and I am grateful for those and we are always happy to get them, so if you have a word please send it. I don't have a specific verse that is on my mind, but there is a song that I have been singing over and over in my head and that is "Praise You In This Storm" by Casting Crowns. I will end this post with the lyrics to this song and although the lyrics are fantastic alone, I encourage everyone to listen to the song because it is very powerful.
I was sure by now
God, You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear You whisper through the rain
"I'm with You"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear You whisper through the rain
"I'm with You"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
Though my heart is torn
I will praise You in this storm
The doctors are still stumped at this point. I believe there are more test results that haven't come back yet, they said they would let us know when they learn anything. I'm sure we will find out anything there is to find out tomorrow morning at rounds.
The last 2 nights Chris and I slept on some couches in the family lounge at the hospital but tonight we have gotten a room at Ronald McDonald House, which is only a few blocks from the hospital. We will be staying here for a while, but we are on a waiting list to get into the Rossi House, which is a similar facility that is located inside the hospital. That way we will have a private area to sleep and shower and rest during the times we are not with Elijah. We are looking forward to that so we can be in the same building with him. Even though there is nothing we can do and there is no way to interact with him, it is still incredibly difficult to be away from him.
We have gotten so much encouragement and support from friends and family, we are just overwhelmed. Please continue to pray and even though we don't get a chance to respond to everyone's messages, trust me when I say that we are incredibly grateful for each and every one. Every little bit of encouragement helps us, and every person who says they are praying for us is an incredible blessing.
Anyone who is in the area, feel free to visit. We love having visitors. Elijah is in the Pediatric ICU, 7th floor, in room 3. We are usually in the family lounge down the hall.
I keep thinking I should write about how Chris and I are feeling, but I just can't find the words. We are resting in God's faithfulness and trusting Him. There are many scriptures people have sent us and I am grateful for those and we are always happy to get them, so if you have a word please send it. I don't have a specific verse that is on my mind, but there is a song that I have been singing over and over in my head and that is "Praise You In This Storm" by Casting Crowns. I will end this post with the lyrics to this song and although the lyrics are fantastic alone, I encourage everyone to listen to the song because it is very powerful.
I was sure by now
God, You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear You whisper through the rain
"I'm with You"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear You whisper through the rain
"I'm with You"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
Though my heart is torn
I will praise You in this storm
Elijah's Condition
For those of you who are interested, I've decided to write a note to fill everyone in on the situation with Elijah. So here goes...
Saturday night we noticed that Elijah was looking sick and starting to wheeze. Since he was hospitalized in March with pneumonia and influenza we didn't want to take any chances so we brought him in to the emergency room about 9:00 Saturday night. They ran some tests, his level of oxygen in the blood was good at about 98%. They did an x-ray and saw a little fluid in his right lung. They also looked in his ears and determined that both of them were infected. They said he had a little pneumonia and sent us home with antibiotics and a nebulizer for regular albuterol treatments. He made it through that night ok, coughing and wheezing and a little fever, but nothing too concerning. The next day he seemed a little better, still wheezing and coughing and sounding congested, but eating fine and playing a little bit. Later in the evening we put him down for bed and heard him waking up occasionally and crying and going back to sleep. Finally around 10pm he woke up again and we picked him up and noticed that his chest was heaving, his nostrils were flaring, and he was turning slightly blue. We immediately left and took him back to the hospital in Cedar Rapids. They did tests right away, his oxygen level was barely 50% so they immediately started a constant albuterol treatment. They took an x-ray and realized that his right lung was completely collapsed, a hugely significant change from the night before. They decided to transport us by ambulance a half hour away to the University of Iowa hospital in Iowa City.
When we got to UIHC they brought him directly to the pediatric ICU and spent the night mostly trying to keep his oxygen level up. We were allowed in early in the morning after they had him mostly stabilized. They continued doing tests to determine why his lungs were failing, including putting a camera into his lungs and asophagus and looking for foreign objects that may have clogged his airway. They found nothing. All they could see was that his lungs were very red and swollen and there was a lot of pus, which they also discovered had no bacteria in it. So they were ruling out a lot of scenarios, but not necessarily getting any closer to determining what the problem was. They were still assisting his breathing by manually pumping air into him, but since his right lung was completely collapsed, his left lung was working too hard and they were afraid it could burst or fail or a number of things could go wrong if they continued to force air into his lungs.
They finally reached a point where they told us they were going to have to put him on an ECMO (Extracorporeal Membrane Oxygenation) which is basically a machine that takes over his lung function. They insert a tube into his jugular vein and his blood is pumped through the tube into the machine which puts oxygen into it, then it is pumped back into his body. They went ahead with this surgery Monday afternoon, the surgery went well but he still wasn't getting enough oxygen through it, so they put him on a ventilator as well. The ventilator is not working as hard as it would without the ECMO machine, but together they are both working enough to keep the right amount of oxygen in his blood. This means his lungs are still doing some work, but not near as much pressure is on them as it was when they were pumping air in. Their original goal was to slowly turn the ventilator off until he is getting enough oxygen on the ECMO alone so that his lungs can be completely shut off, but they were talking this morning and the two working together are doing the job just fine without making his lungs worse so they may keep him like this for a while and see what happens. Initially after the surgery they did some x-rays of his lungs and they had already improved, there is some function in both of them, but they are not near healed, just a small improvement. However since that initial improvement, they have been at a stand-still. So now we are at a point where we are just waiting to see what is going to happen. They are constantly monitoring him, someone has to be in the room at all times. They are doing frequent x-rays of his lungs to see if there are any changes. They are also still completely stumped as to what has caused this and are waiting for some more test results to come back. We will be in a waiting period now for several weeks before we know anything.
He is out of immediate danger because he has enough oxygen and his body is not fighting anymore. However, in order to use the ECMO his blood has been thinned and that means extra risk of internal bleeding, so we have to be on the lookout for that. Also, he is completely dependent on this machine for life right now. If he doesn't heal on his own there will be a point where they have to turn the machine off. The doctor told us to be prepared for this situation. He also told us that it is only a 50/50 chance whether Elijah will be able to survive again without this machine.
I know that because he is currently "critically stable" people have a tendency to forget he is in danger, but I cannot stress enough that he is in extreme danger and we need you to keep praying, please don't forget!
Chris and I are desperate for your prayers and we appreciate so much all the support we have gotten from everyone. We cannot tell you how much it means to us. We are extremely scared but we can tell that people have been praying for our peace because we are at peace and we are believing and having faith that Elijah will make it through this. We know that God is greater than this illness and we know He can defeat it. We are trying not to be afraid, because fear is not of God. Elijah is in His hands and that is enough for us.
Thank you again for everything, we will continue to update if anything changes. I will either update on here or on my facebook or both, so if you are interested or if you are praying please read them so you can stay informed.
Again, this is going to take several weeks, so please don't forget us or give up on us. Please keep Elijah in your prayers.
Saturday night we noticed that Elijah was looking sick and starting to wheeze. Since he was hospitalized in March with pneumonia and influenza we didn't want to take any chances so we brought him in to the emergency room about 9:00 Saturday night. They ran some tests, his level of oxygen in the blood was good at about 98%. They did an x-ray and saw a little fluid in his right lung. They also looked in his ears and determined that both of them were infected. They said he had a little pneumonia and sent us home with antibiotics and a nebulizer for regular albuterol treatments. He made it through that night ok, coughing and wheezing and a little fever, but nothing too concerning. The next day he seemed a little better, still wheezing and coughing and sounding congested, but eating fine and playing a little bit. Later in the evening we put him down for bed and heard him waking up occasionally and crying and going back to sleep. Finally around 10pm he woke up again and we picked him up and noticed that his chest was heaving, his nostrils were flaring, and he was turning slightly blue. We immediately left and took him back to the hospital in Cedar Rapids. They did tests right away, his oxygen level was barely 50% so they immediately started a constant albuterol treatment. They took an x-ray and realized that his right lung was completely collapsed, a hugely significant change from the night before. They decided to transport us by ambulance a half hour away to the University of Iowa hospital in Iowa City.
When we got to UIHC they brought him directly to the pediatric ICU and spent the night mostly trying to keep his oxygen level up. We were allowed in early in the morning after they had him mostly stabilized. They continued doing tests to determine why his lungs were failing, including putting a camera into his lungs and asophagus and looking for foreign objects that may have clogged his airway. They found nothing. All they could see was that his lungs were very red and swollen and there was a lot of pus, which they also discovered had no bacteria in it. So they were ruling out a lot of scenarios, but not necessarily getting any closer to determining what the problem was. They were still assisting his breathing by manually pumping air into him, but since his right lung was completely collapsed, his left lung was working too hard and they were afraid it could burst or fail or a number of things could go wrong if they continued to force air into his lungs.
They finally reached a point where they told us they were going to have to put him on an ECMO (Extracorporeal Membrane Oxygenation) which is basically a machine that takes over his lung function. They insert a tube into his jugular vein and his blood is pumped through the tube into the machine which puts oxygen into it, then it is pumped back into his body. They went ahead with this surgery Monday afternoon, the surgery went well but he still wasn't getting enough oxygen through it, so they put him on a ventilator as well. The ventilator is not working as hard as it would without the ECMO machine, but together they are both working enough to keep the right amount of oxygen in his blood. This means his lungs are still doing some work, but not near as much pressure is on them as it was when they were pumping air in. Their original goal was to slowly turn the ventilator off until he is getting enough oxygen on the ECMO alone so that his lungs can be completely shut off, but they were talking this morning and the two working together are doing the job just fine without making his lungs worse so they may keep him like this for a while and see what happens. Initially after the surgery they did some x-rays of his lungs and they had already improved, there is some function in both of them, but they are not near healed, just a small improvement. However since that initial improvement, they have been at a stand-still. So now we are at a point where we are just waiting to see what is going to happen. They are constantly monitoring him, someone has to be in the room at all times. They are doing frequent x-rays of his lungs to see if there are any changes. They are also still completely stumped as to what has caused this and are waiting for some more test results to come back. We will be in a waiting period now for several weeks before we know anything.
He is out of immediate danger because he has enough oxygen and his body is not fighting anymore. However, in order to use the ECMO his blood has been thinned and that means extra risk of internal bleeding, so we have to be on the lookout for that. Also, he is completely dependent on this machine for life right now. If he doesn't heal on his own there will be a point where they have to turn the machine off. The doctor told us to be prepared for this situation. He also told us that it is only a 50/50 chance whether Elijah will be able to survive again without this machine.
I know that because he is currently "critically stable" people have a tendency to forget he is in danger, but I cannot stress enough that he is in extreme danger and we need you to keep praying, please don't forget!
Chris and I are desperate for your prayers and we appreciate so much all the support we have gotten from everyone. We cannot tell you how much it means to us. We are extremely scared but we can tell that people have been praying for our peace because we are at peace and we are believing and having faith that Elijah will make it through this. We know that God is greater than this illness and we know He can defeat it. We are trying not to be afraid, because fear is not of God. Elijah is in His hands and that is enough for us.
Thank you again for everything, we will continue to update if anything changes. I will either update on here or on my facebook or both, so if you are interested or if you are praying please read them so you can stay informed.
Again, this is going to take several weeks, so please don't forget us or give up on us. Please keep Elijah in your prayers.
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