Admitted To The Hospital
Today was Gideon's Echo. Just as I thought, as soon as a medical professional that could do something saw him he would be in the hospital. I was not surprised, but sadly unprepared, when the doctor said they were going to admit Gideon. We spent the day in the hospital to monitor his heart and get some other things done in possible preparation for surgery.
It all started at 6:30 am when Gideon and I had to leave for the hospital for the Echo. Doug got all the kids off to school and met us at the hospital. I think we have mentioned that Gideon hates the doctors. It was no different this morning. We got to the room and he cried hard. They were going to sedate Gideon for the Echo so they could get pictures without him crying but when they got his oxygen saturation level they quickly decided that sedation was not an option. He has been in the low 70's when healthy is in the 90's. Gideon's levels this morning were in the 50's. NOT GOOD. We got into the room for the echo and the technician and I decided I should lay down with him. He was hysterical and we needed to calm him down. I began to sing and by the time I got to the last verse of "I Am A Child Of God" he was fast asleep. It was a true blessing.
Doug got there when we were almost done. The technician had to change Gideon's position and that woke him up. She still needed to get picture of the top of his heart but he was now crying again. Doug sat in front of him and held his hands while I lay behind him and I sang again. In time Gideon calmed down and the feeling in that little room felt like a sacred spot on earth. There is no describing what we experienced. We received a great blessing that would be needed for what was to come.
We were moved to another exam room and talked with the Cardiologist and the Fellow with him. We have been fully aware of the severity of Gideon's heart. The doctors were concerned that they would have to say, congratulations and his heat is very complex. We put them at ease immediately letting them know that this would not be a surprise. Next came the real surprise. Gideon has Heterotaxy, a very rare defect that can affect all of his organs. What this means is that it is most likely that his organs are in the wrong positions and he may be missing a spleen. They think also that he has two right lungs instead of a right and left. From what they felt his liver is on the wrong side.
Hearing the news was not bad but that moment is when reality set in. I was filled with sadness for him and had to stop the tears. This is where I needed the peace that had been enjoyed just a few minutes earlier. At this point we were told that they would admit and do more testing along with a heart cath.
After getting to the room the doctors on the floor, who call the shots once the patient is admitted, decided to postpone more tests until Gideon was put under for the heart cath. They didn't want to cause him to have what they call a spell and we have called an episode because his numbers were so low. This is the same reason that in 3 weeks this little guy has only had two baths. He hates them as much as the doctors office. After the Cathaterization they will draw blood for many tests and do an ultrasound on his abdomen to see if he has a spleen. It is likely that Gideon does not. If that is the case he will be on antibiotics the rest of his life along with all the heart meds. Wednesday morning the surgeons and cardiologists will meet to discuss the possibility of operating. When that meeting is over we will know more. They talked about possibly operating a couple of days later. I think as soon as Gideon has a bad day they will make the surgery an emergency but until then they want to make sure the surgeon's are well rested. I have to agree with them.
Now about what they said about his heart. Heart disease can be minor to the point that it heals itself to complicated like Gideon. Wow, I didn't realized my son was a way to measure how complicated a heart can get. I would love to say basically, blah, blah, blah, but there is no basically here. I followed the explanation fairly well but to repeat what we were told is too hard for this tired brain. What I can easily say is that he is missing a valve, where there should be 4 he has 2 1/2. His main arteries are backwards. The blood flowing into the heart is going into two places not just the one it's supposed to go into. There is not divider between the lower chambers and some other things. The one good thing is, his main artery looks fairly good just a little small. If that were not the case there would be no hop.
When the doctor got done explaining everything thinking we would be having a hard time with this. He then gave us a glimmer of hope. He is hopeful that they may be able to operate and do it all in one shot. There would be no way to go in and fix parts then later do more. If they do one thing they will have to do it all. Through the day I have had faith that what the Lord wants will take place and we will be prepared for it. By the time I left Doug at the hospital and was on my way home I started to wonder how we will juggle all the responsibilities of home and fill the needs of the kids that need us so badly right now. Once again my faith will be stretched and I will have to rely on our Father to care for and nurture the children while I am away most of the time.
This has gone on long enough but I need to let some people know that I have noticed them and would love to email but I just can't right now. If you contacted me in China I truly appreciate it. I planned to respond when home but jet lag, the flue and putting my home and life back together along with the normal responsibilities of life didn't permit me the time. I am so sorry.
I do want to say, Emilee, you have such a cute little girl and we are so happy for you and Shane. You are going to be fantastic parents!
This post may not have made a lot of sense. I'm sorry. So much to say and my brain is fried.
It all started at 6:30 am when Gideon and I had to leave for the hospital for the Echo. Doug got all the kids off to school and met us at the hospital. I think we have mentioned that Gideon hates the doctors. It was no different this morning. We got to the room and he cried hard. They were going to sedate Gideon for the Echo so they could get pictures without him crying but when they got his oxygen saturation level they quickly decided that sedation was not an option. He has been in the low 70's when healthy is in the 90's. Gideon's levels this morning were in the 50's. NOT GOOD. We got into the room for the echo and the technician and I decided I should lay down with him. He was hysterical and we needed to calm him down. I began to sing and by the time I got to the last verse of "I Am A Child Of God" he was fast asleep. It was a true blessing.
Doug got there when we were almost done. The technician had to change Gideon's position and that woke him up. She still needed to get picture of the top of his heart but he was now crying again. Doug sat in front of him and held his hands while I lay behind him and I sang again. In time Gideon calmed down and the feeling in that little room felt like a sacred spot on earth. There is no describing what we experienced. We received a great blessing that would be needed for what was to come.
We were moved to another exam room and talked with the Cardiologist and the Fellow with him. We have been fully aware of the severity of Gideon's heart. The doctors were concerned that they would have to say, congratulations and his heat is very complex. We put them at ease immediately letting them know that this would not be a surprise. Next came the real surprise. Gideon has Heterotaxy, a very rare defect that can affect all of his organs. What this means is that it is most likely that his organs are in the wrong positions and he may be missing a spleen. They think also that he has two right lungs instead of a right and left. From what they felt his liver is on the wrong side.
Hearing the news was not bad but that moment is when reality set in. I was filled with sadness for him and had to stop the tears. This is where I needed the peace that had been enjoyed just a few minutes earlier. At this point we were told that they would admit and do more testing along with a heart cath.
After getting to the room the doctors on the floor, who call the shots once the patient is admitted, decided to postpone more tests until Gideon was put under for the heart cath. They didn't want to cause him to have what they call a spell and we have called an episode because his numbers were so low. This is the same reason that in 3 weeks this little guy has only had two baths. He hates them as much as the doctors office. After the Cathaterization they will draw blood for many tests and do an ultrasound on his abdomen to see if he has a spleen. It is likely that Gideon does not. If that is the case he will be on antibiotics the rest of his life along with all the heart meds. Wednesday morning the surgeons and cardiologists will meet to discuss the possibility of operating. When that meeting is over we will know more. They talked about possibly operating a couple of days later. I think as soon as Gideon has a bad day they will make the surgery an emergency but until then they want to make sure the surgeon's are well rested. I have to agree with them.
Now about what they said about his heart. Heart disease can be minor to the point that it heals itself to complicated like Gideon. Wow, I didn't realized my son was a way to measure how complicated a heart can get. I would love to say basically, blah, blah, blah, but there is no basically here. I followed the explanation fairly well but to repeat what we were told is too hard for this tired brain. What I can easily say is that he is missing a valve, where there should be 4 he has 2 1/2. His main arteries are backwards. The blood flowing into the heart is going into two places not just the one it's supposed to go into. There is not divider between the lower chambers and some other things. The one good thing is, his main artery looks fairly good just a little small. If that were not the case there would be no hop.
When the doctor got done explaining everything thinking we would be having a hard time with this. He then gave us a glimmer of hope. He is hopeful that they may be able to operate and do it all in one shot. There would be no way to go in and fix parts then later do more. If they do one thing they will have to do it all. Through the day I have had faith that what the Lord wants will take place and we will be prepared for it. By the time I left Doug at the hospital and was on my way home I started to wonder how we will juggle all the responsibilities of home and fill the needs of the kids that need us so badly right now. Once again my faith will be stretched and I will have to rely on our Father to care for and nurture the children while I am away most of the time.
This has gone on long enough but I need to let some people know that I have noticed them and would love to email but I just can't right now. If you contacted me in China I truly appreciate it. I planned to respond when home but jet lag, the flue and putting my home and life back together along with the normal responsibilities of life didn't permit me the time. I am so sorry.
I do want to say, Emilee, you have such a cute little girl and we are so happy for you and Shane. You are going to be fantastic parents!
This post may not have made a lot of sense. I'm sorry. So much to say and my brain is fried.
I'm glad you have some answers. Sometimes, good or bad, it's comforting to know what you are dealing with. It was neat hearing your experience with the echo. When Jared had his he screamed the whole time. It is hard. Having had it with two of my boys I understand the terror of waiting but hoping it provides answers. I'm terrible at emailing but I want you to know I'm thinking of you guys. You have great kids, it may be a rough road ahead but you've got a great support system, just wish we could be a part of it. Gideon and your family are in our prayers.
ReplyDeleteLove you!!
Hugs to you and yours. I am so sorry that it is going to be more complicated but hopeful for you all. I know God will carry you through like he always does.
ReplyDeleteWhat can I say except that we love you and are praying for ALL of you; including those cuties left home. Would anyone like to come hang out in WA? I have had a little practice at the homeschool thing. :)Love Doreen
ReplyDeleteI'm sorry it has taken me so long to check in with you. I'm gonna send you a private email.
ReplyDelete