So July 7th Seth was due for a new set of tubes and another ABR hearing test. I was really unsure about going through with the surgery because of the cold that he had and how bad his breathing can get. They kept telling me that he would be fine for surgery so I decided I would go down there just to prove them wrong. So Thursday morning I had to get up and get him to the hospital by 5:30 cause the surgery was at 7am. I was totally waiting for them to send me home but he ended up not having a fever at all just sounded really congested. It just so happened that the anesthesiologist worked many years with my mom and he came in a talked with me and said that he would actually intubate him and give him 2 breathing treatments before the surgery. Normally with a 5 min surgery they would just knock him out but because of his situation and the fact that he was already so congested they decided to intubate him plus the hearing test would be about an hour and he has to be under for that as well.
So about 7:10am they took him back and sent me into the waiting room. I saw the doctor walking around 10 mins later so I knew that they have moved on to the hearing test and were done with the tubes. I knew the hearing test itself was about an hour so around 8:30am at the latest I thought that they would be done but NOPE. The came 9am and still nothing so by this point I am getting worried and thinking either the hearing test is not going well or something else is going on. By 9:45am the doctor finally came out and sat next to me and said, "He has profound hearing loss in the left ear. The right ear is perfect and he should be able to develop speech just fine." I lost it and started bawling he basically just handed me a box of tissues and said I am a guy and not good with this stuff. I was a mess and felt so bad that his hearing is going as well. I prayed all the time that if he is going to be blind please let him keep his hearing. It was a very hard blow and something that I still have a hard time with. I went back and saw him as soon as they let me and he was so not happy. The nurse said that he had some issues after surgery with breathing and his O2 at 82 but after they suctioned him he went back to 97. The doctor came back in and I had a few questions for him. I asked about the possibility of hearing aids and if he thinks the hearing will leave his right ear as well. He said that we can for sure aid him but that when he turns 4 he would like to do a BAHA (bone anchored hearing aid) basically he described it...they would go in a place a titanium implant into his skull and then he would have a little button on the outside of his head by his ear and the hearing aid would transmit the vibrations to the good ear and make him hear. Kind of confusing but makes sense when they explain it :) He also said that he does not think he will lose the hearing in the right ear because he should already show signs or loss by now. I will not get my hopes up because I read so many stories of cmv kids randomly losing their hearing at all different ages...so I will just pray he keeps it and we are able to get the BAHA.
So we got to go home and went back to Dr Fucci a week later. He checked out his ear and explained his hearing loss a little more. Basically in right ear is perfect and in normal ranges for everything the left ear on the other hand is pretty bad. He said that Seth starts hearing sounds of trains or airplanes. So if I were to sit Seth next to a train he can barely start hearing that. The crazy thing is how fast his hearing left. I remember in the NICU hearing was perfect and then in April 2010 they did his first set of tubes and an ABR hearing test. I thought he said that it came back great but actually he was already at slight hearing loss in his left ear. Just before Christmas I noticed him always holding things up to his right ear and for a little bit I though oh no his hearing is gone from the left but he would always hear the quietest things so I thought maybe he rather hold things up to that ear and not his left. I should have known something was going on.
If you think about it please pray for Seth that they hearing does not leave his right ear and pray for me that I keep up the strength cause this road is hard and I do get tired!
The Marinellos
Tuesday, August 23, 2011
Seth turns 2!
So Seth had his second birthday and it just so happened that it was also the same day as his Cold Stone fundraiser so why not have a fun day at Cold Stone!
Lisa and I met up at Cold Stone and then quite of people came around lunch time and got to see Seth and have lots of ice-cream. Lisa and the kids got him a little button for his shirt, a piano which he loves and also a thing that makes a weird noise...I have no idea what it is called :) We had a great time there and of course I was the one that left my camera at home on his birthday but Lisa did get a few pictures but he was quite a pill that day so here are a few that I stole from her FB page :)
Lisa and I met up at Cold Stone and then quite of people came around lunch time and got to see Seth and have lots of ice-cream. Lisa and the kids got him a little button for his shirt, a piano which he loves and also a thing that makes a weird noise...I have no idea what it is called :) We had a great time there and of course I was the one that left my camera at home on his birthday but Lisa did get a few pictures but he was quite a pill that day so here are a few that I stole from her FB page :)
The only way he was happy...hanging upside down
Drew with Em
See not happy! (he did have surgery 6 days before maybe thats part of it)
OH Goodness!
Seth we LOVE you so much and we are so blessed to have you as our son. You are an amazing little boy who surprises us every day. You have been through so much in your 2 years of life yet you are so very strong! You can light up a room with your great big smile and your laugh is so precious and you can not help but smile. You might be one of the silliest, most stubborn, craziest little boy I know. I love you with everything that I have and can not wait to see what God has in store for you!
Monday, August 8, 2011
Surgery!
Okay so can we say I am a little behind on this blog, oh goodness! So this will be the first of many posts to come so keep your eyes open for new ones :)
Seth had his g-tube surgery on June 16th.
Wednesday night I took Sydney over to the MacCallum's because they were amazing and totally willing to keep her for the few nights. That night I decided to try and keep Seth up a little later because after 3am he could not have any pediasure so I think I got him to last until 9:30pm and he was ready for bed. I set my alarm for 3am to try and get Seth up and eat a little bit but of course he wanted nothing to do with it and went right back to bed. We woke up and got Emmy to my moms house by 8:00am so that we could give her any instructions and went on our way to Phoenix Children's. We got there at 9:30am so guess what we waited and waited for what seemed like forever. We finally got into a room and got him in his gown around 11am and then we waited some more. Let me remind you that Seth has not eaten anything since 9:30pm the night before and he was hungry. He was allowed to have clear liquids up until 8am and guess what SETH does not drink anything but his pediasure but man I had to try and he refused. So around 12:45pm the nurse came in again and said that the surgeon had to go into an emergency heart surgery so when she is done she will come and do Seth. But let me tell you Seth was such a happy boy playing on the hospital bed and you know whats even better...........HE CRAWLED for the first time ever. I had to sneeze so as I was getting a kleenex Mike was yelling at me to look at Seth cause he crawled but I did not believe it at all, but then all of a sudden I caught a little glimpse of what he was talking about. So I told Mike that he had to have his phone on video and have it in the ready position. I got the little piano he was playing with earlier and started moving it away from him and he decided to get up on all fours and just decided to camp out there for a little bit and then all of a sudden he was off and he decided he was just going to crawl across the entire bed! It was so AMAZING! For a while I always had expectations for Seth and then I decided to always fight for him and try my best to not set high expectations that can not be met so that I will not get disappointed so that is what I did and you know what when he crawled it was so amazing because I never knew if he was going to be able to do it and he proved that HE can and he does it so well. Mike and I at that moment actually wanted to pack up our things and leave because we were afraid that after his surgery he was not going to start crawling again because it will be on his stomach. But since then he has done it a couple times. He does not do it all the time and not even every day but he can crawl and that is enough for me.
Okay back to the surgery. So finally about 1:45pm they took him back and every time he goes back you would think it would get easier but it never is. The surgery itself was about a half hour but it took more like an hour until we could go back and see him. He stayed sleeping for a while with oxygen and finally we got a room around 4:30pm. He was in quite a bit of pain and was on morphine right when we got in the room and went back to sleep. Around 8:00pm Seth got a roommate and can I just say NEVER put an older kid with a little one. I honestly do not get that at all. The surgery was done at the new hospital but he had to be at the old one for the stay and that means sharing a room. I can not wait until everything is at the new one and then we wont have to share rooms anymore. Anyways this boy was 15 years old with a really bad kidney infection and horrible headaches and then you have Seth crying during the night and I did not get much sleep I am thinking about 2 hours at the max. I had a night nurse that I could barely understand and she wanted to wake him up to change his diaper and I just wanted to smack her because why would you wake up a sleeping "baby" toddler to change the diaper, who just had surgery and needs to sleep not wake up? I told her no and we can change it when he wakes up. He woke up at about 3am and I was asked again to change his diaper which I did even though it was totally dry! We then got a talk from her and from what I understood he needs to have wet diapers or we were not going to be able to go home. Sure enough by 6:45am he had 3 very full diapers and she left me alone. Around 10am on Friday we had the dr come in and she told us that we would be able to go home if Seth could keep his normal feeding amounts down so we had to wait for the nutritionist to come in and talk to us and figure out what his feeding schedule was going to be. I know for a simple fact that I did not want to have feedings at night because he already knows how to sleep through the night and I really do not want him to be so different than other kids and eat at night and only a little bit during the day. If he was totally not gaining weight and actually losing weight than I would do night feedings but I just did not see the point as of right now and I was so glad that she agreed with me. And since he does take a bottle and about 8oz each time we did not have to get a pump. Everything is gravity which is really nice. So by this time it is about 1:45pm and He has not eaten for over 24 hours and they decided to try some food. So at about 2 we gave him 6oz of food and kept it down just fine!!!!!! YAY we were going to go home and then we both looked at each other and had no idea how to do any of this and we knew that we needed to be able to because whatever food he does not finish from the bottle goes straight into the tube and that mean in a few hours he was going to eat again and we had no idea what we were doing. So when the nurse released us we asked her to show us how and she did but apparently there were some other things that we needed to know that we found out 2 weeks later. So we got to go home...and after we got home I went and got Sydney for the wonderful MacCallums and my dad brought Emmy home for us. The first 3 nights were pretty rough cause all he wants to do is sleep on his belly and it really hurt him to do so. But can I say he slept a lot and I loved it. I think the first three mornings home he did not wake up until 10am and Mike and I were able to sleep in until about 8:30am which was AMAZING! The next few days took a while to get use to and you always realize when you do something wrong because you will either have food or medicine all over you! I think I have done that about twice already! Giving him is medicine is about a million times better...what use to take us about 30-45min to give meds now takes us about 2 minutes so that is a major blessing and benefit to having the g-tube! Thank you all who were praying for Seth and those that continue to do so we are so blessed to have prayers going for our special little boy.
Blog Posts up next:
Seths First Birthday
Ear Tube surgery
Wheelchair and appointments
Palm Springs
Seth had his g-tube surgery on June 16th.
Wednesday night I took Sydney over to the MacCallum's because they were amazing and totally willing to keep her for the few nights. That night I decided to try and keep Seth up a little later because after 3am he could not have any pediasure so I think I got him to last until 9:30pm and he was ready for bed. I set my alarm for 3am to try and get Seth up and eat a little bit but of course he wanted nothing to do with it and went right back to bed. We woke up and got Emmy to my moms house by 8:00am so that we could give her any instructions and went on our way to Phoenix Children's. We got there at 9:30am so guess what we waited and waited for what seemed like forever. We finally got into a room and got him in his gown around 11am and then we waited some more. Let me remind you that Seth has not eaten anything since 9:30pm the night before and he was hungry. He was allowed to have clear liquids up until 8am and guess what SETH does not drink anything but his pediasure but man I had to try and he refused. So around 12:45pm the nurse came in again and said that the surgeon had to go into an emergency heart surgery so when she is done she will come and do Seth. But let me tell you Seth was such a happy boy playing on the hospital bed and you know whats even better...........HE CRAWLED for the first time ever. I had to sneeze so as I was getting a kleenex Mike was yelling at me to look at Seth cause he crawled but I did not believe it at all, but then all of a sudden I caught a little glimpse of what he was talking about. So I told Mike that he had to have his phone on video and have it in the ready position. I got the little piano he was playing with earlier and started moving it away from him and he decided to get up on all fours and just decided to camp out there for a little bit and then all of a sudden he was off and he decided he was just going to crawl across the entire bed! It was so AMAZING! For a while I always had expectations for Seth and then I decided to always fight for him and try my best to not set high expectations that can not be met so that I will not get disappointed so that is what I did and you know what when he crawled it was so amazing because I never knew if he was going to be able to do it and he proved that HE can and he does it so well. Mike and I at that moment actually wanted to pack up our things and leave because we were afraid that after his surgery he was not going to start crawling again because it will be on his stomach. But since then he has done it a couple times. He does not do it all the time and not even every day but he can crawl and that is enough for me.
Okay back to the surgery. So finally about 1:45pm they took him back and every time he goes back you would think it would get easier but it never is. The surgery itself was about a half hour but it took more like an hour until we could go back and see him. He stayed sleeping for a while with oxygen and finally we got a room around 4:30pm. He was in quite a bit of pain and was on morphine right when we got in the room and went back to sleep. Around 8:00pm Seth got a roommate and can I just say NEVER put an older kid with a little one. I honestly do not get that at all. The surgery was done at the new hospital but he had to be at the old one for the stay and that means sharing a room. I can not wait until everything is at the new one and then we wont have to share rooms anymore. Anyways this boy was 15 years old with a really bad kidney infection and horrible headaches and then you have Seth crying during the night and I did not get much sleep I am thinking about 2 hours at the max. I had a night nurse that I could barely understand and she wanted to wake him up to change his diaper and I just wanted to smack her because why would you wake up a sleeping "baby" toddler to change the diaper, who just had surgery and needs to sleep not wake up? I told her no and we can change it when he wakes up. He woke up at about 3am and I was asked again to change his diaper which I did even though it was totally dry! We then got a talk from her and from what I understood he needs to have wet diapers or we were not going to be able to go home. Sure enough by 6:45am he had 3 very full diapers and she left me alone. Around 10am on Friday we had the dr come in and she told us that we would be able to go home if Seth could keep his normal feeding amounts down so we had to wait for the nutritionist to come in and talk to us and figure out what his feeding schedule was going to be. I know for a simple fact that I did not want to have feedings at night because he already knows how to sleep through the night and I really do not want him to be so different than other kids and eat at night and only a little bit during the day. If he was totally not gaining weight and actually losing weight than I would do night feedings but I just did not see the point as of right now and I was so glad that she agreed with me. And since he does take a bottle and about 8oz each time we did not have to get a pump. Everything is gravity which is really nice. So by this time it is about 1:45pm and He has not eaten for over 24 hours and they decided to try some food. So at about 2 we gave him 6oz of food and kept it down just fine!!!!!! YAY we were going to go home and then we both looked at each other and had no idea how to do any of this and we knew that we needed to be able to because whatever food he does not finish from the bottle goes straight into the tube and that mean in a few hours he was going to eat again and we had no idea what we were doing. So when the nurse released us we asked her to show us how and she did but apparently there were some other things that we needed to know that we found out 2 weeks later. So we got to go home...and after we got home I went and got Sydney for the wonderful MacCallums and my dad brought Emmy home for us. The first 3 nights were pretty rough cause all he wants to do is sleep on his belly and it really hurt him to do so. But can I say he slept a lot and I loved it. I think the first three mornings home he did not wake up until 10am and Mike and I were able to sleep in until about 8:30am which was AMAZING! The next few days took a while to get use to and you always realize when you do something wrong because you will either have food or medicine all over you! I think I have done that about twice already! Giving him is medicine is about a million times better...what use to take us about 30-45min to give meds now takes us about 2 minutes so that is a major blessing and benefit to having the g-tube! Thank you all who were praying for Seth and those that continue to do so we are so blessed to have prayers going for our special little boy.
In recovery a little longer than planned cause he needed a little help breathing
What is stomach looks like now...thats his new little friend.
Blog Posts up next:
Seths First Birthday
Ear Tube surgery
Wheelchair and appointments
Palm Springs
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