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!
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