WOW
Our appointment to start the pre-op was for 11 am. We were told that the surgeon wanted to meet with us before we start the pre-op. He was in the OR and they expect him back around noon. Okay...we waited and waited and waited. The motion senor light went out on us as we sat perfectly still (I think we fell asleep) in the room.
He was finally able to meet us sometime after 1. Most of what he said was WAY over my head. In a nut shell...Josiah's heart anatomy is still very much a mystery to them and he can't just open him up and start cutting him up to figure it out. They know he has transposition of the great arteries. I found out yesterday that he only has one coronary (it branches out into two but it only connects at one location). The thing that is leaving them scratching their heads is the whole in the bottom of his heart (DORV). Some suspect he may even have more than one whole. His heart is extremely rare. The surgeon has been doing this for 15 years. And he said Josiah's is one of the worst he's seen. He said he's seen all the components just not all together in one heart.
The surgeries that they are looking at doing are very complex and they want Josiah to be bigger. When I asked if that means weeks or months he said months. They have only been doing heart surgery for 50 years. The surgeries they are looking to do on Josiah they have only been doing for 25 years. They don't know the ramifications of such surgerys as the patient gets older because nobody has ever lived to 40 or 50 any beyond. They haven't been doing the surgeries that long.
Anyway, none of the surgery option sound very appealing to us. It doesn't sound like they can fix his heart to function like a normal heart. He's got to many issues.
The next step is to get more imaging. An MRI and an ecco where they go down his esophagus. Both procedures will require him to be put to sleep. I will meet with his cardiologist next week to see where we go from here. This is going to be an even longer road than we thought. It's hard and some days feel downright miserable. However, it's not about us. We live for God's glory and we pray He shines while we are on this journey.
Thursday, September 15, 2011
Saturday, September 10, 2011
9-10-11
6 days and counting
Josiah's appointments at Childrens on the 8th went well. His clot is as small as it's going to get (according to the doc). She doesn't foresee that it will cause him any trouble.
By the end of the day I felt pretty rotten. Sore throat, pressure in my ears, etc. I spent almost all day in bed yesturday. I'm feeling a bit better today. Still stuffy and plugged ears but at least I'm out of bed. I've got way to much to do between now and Wednesday to be sick.
Josiah's appointments at Childrens on the 8th went well. His clot is as small as it's going to get (according to the doc). She doesn't foresee that it will cause him any trouble.
By the end of the day I felt pretty rotten. Sore throat, pressure in my ears, etc. I spent almost all day in bed yesturday. I'm feeling a bit better today. Still stuffy and plugged ears but at least I'm out of bed. I've got way to much to do between now and Wednesday to be sick.
9-7-11
One more to go...
Josiah has one more day of appointments to go before his pre-op on the 14th. But that is more for Hans and I then him. He got an eco done on his heart before (that's a fancy way to say an ultrsound of his heart).
****As I'm typing I hear Morgan say, "that is the first time Josiah has smiled at me." He is sitting on my lap. I look down at him and he is gazing into his sissy's eyes giving her a great big smile. What a sweet boy. He melts our hearts!******
Back to his update...His heart looked great. The left ventricle seems to be staying strong and the hole from the septostomy is still open. I didn't realize I was going to have to take him to get x-rays of his chest after we were done at the cardiologist. I may not have ventured to take all the other children. But it worked out. I have great little ones! Josiah is one exhausted little guy though. His naps are completely interrupted all day long on these appointment days.
His surgery is estimated to be 4-6 hrs long. Hans and I will meet with the surgeon in one week. I call it the great and dreadful day!
We head out tomorrow to Seattle for an ultrasound on his leg that had the blood clot. Let's all pray that they will tell me I don't have to give him Lovenox shots anymore. It will be another long day for the Stol family. Then I will get the switch gears a little bit and think about packing.
Josiah has one more day of appointments to go before his pre-op on the 14th. But that is more for Hans and I then him. He got an eco done on his heart before (that's a fancy way to say an ultrsound of his heart).
****As I'm typing I hear Morgan say, "that is the first time Josiah has smiled at me." He is sitting on my lap. I look down at him and he is gazing into his sissy's eyes giving her a great big smile. What a sweet boy. He melts our hearts!******
Back to his update...His heart looked great. The left ventricle seems to be staying strong and the hole from the septostomy is still open. I didn't realize I was going to have to take him to get x-rays of his chest after we were done at the cardiologist. I may not have ventured to take all the other children. But it worked out. I have great little ones! Josiah is one exhausted little guy though. His naps are completely interrupted all day long on these appointment days.
His surgery is estimated to be 4-6 hrs long. Hans and I will meet with the surgeon in one week. I call it the great and dreadful day!
We head out tomorrow to Seattle for an ultrasound on his leg that had the blood clot. Let's all pray that they will tell me I don't have to give him Lovenox shots anymore. It will be another long day for the Stol family. Then I will get the switch gears a little bit and think about packing.
8-29-11
I took Josiah to his pediatrician this morning and he gave another good report. Josiah's oxygen levels are holding steady and he is up to 8 lb's 6 oz. He was 6 lb's 11 oz at birth.
Sept 15th (his surgery day) is approaching quickly. I'm going to try and get some pictures updated on here so you can see this cute little guy with out all the tubes in him.
I'm starting to feel like I'm getting my brain back. It feels good to be able to have some clarity of thought. The moving in process is slowly getting done. Thanks to all who have helped with that. There is still lots to do so if you feel like helping I would love it. Just give me a call and we can arrange a time. My cell is (253) 312-0969.
Sept 15th (his surgery day) is approaching quickly. I'm going to try and get some pictures updated on here so you can see this cute little guy with out all the tubes in him.
I'm starting to feel like I'm getting my brain back. It feels good to be able to have some clarity of thought. The moving in process is slowly getting done. Thanks to all who have helped with that. There is still lots to do so if you feel like helping I would love it. Just give me a call and we can arrange a time. My cell is (253) 312-0969.
8-23-11
It took two pokes yesterday but Josiah was able to get his blood drawn. In fact I've never seen anyone have an easier time. She hit the right spot and it came freely. Every other time they have to suction it out. That was a nice change.
The cardiologist gave Josiah two thumbs up. He's doing great while he waits for his surgery. I don't have anymore doctor appointments this week! I may just be able to get some more unpacking done.
I'm not able to check my e-mail right now. We downloaded a dumb game off of Bigfish Games and now I can not pull up the log in page of gmail. It is very irritating. If you need to get a hold of me it is best to just give me a call (253) 312-0969.
I'm starting to feel like I'm getting some clarity of thought back. Thank you so much for your prayer support.
The cardiologist gave Josiah two thumbs up. He's doing great while he waits for his surgery. I don't have anymore doctor appointments this week! I may just be able to get some more unpacking done.
I'm not able to check my e-mail right now. We downloaded a dumb game off of Bigfish Games and now I can not pull up the log in page of gmail. It is very irritating. If you need to get a hold of me it is best to just give me a call (253) 312-0969.
I'm starting to feel like I'm getting some clarity of thought back. Thank you so much for your prayer support.
8-22-11
More blood draws!
Last week I had to take Josiah to another lab because the first lab ran the wrong test. The second lab I went to wasn't able to get a draw. The third lab...I told the gal that Josiah was a very hard poke and if she wasn't confident that she could do it please don't try. She was not so we called for IV therapy to come do a scalp draw. They said it could be an hour before they got there which would be to late because it's a timed draw (4 hours after his shot). Praise God that another lady came it to look at Josiah. She shut all the light out and brought our a little red light to put under his hands to get a better look at his veins. She was able to get his blood. He gave her just the right amount before he stopped bleeding. He was able to sleep through part of it to. That makes it so much easier for me.
Unfortunately his level came back below "therapeutic" which is what it needs to be. Now I have to increase his shot dosage to .07 in the am and .06 (the same) in the pm. So back to Mary Bridge to get his blood drawn again today. Then we will head off to the Cardiologist to take a look at his heart.
Every appointment I have I take one of the other children with me. This gives them a chance to feel included in Josiah's care and it also gives them some special one on one (almost) time with mommy. Today is Isaac's turn.
Last week I had to take Josiah to another lab because the first lab ran the wrong test. The second lab I went to wasn't able to get a draw. The third lab...I told the gal that Josiah was a very hard poke and if she wasn't confident that she could do it please don't try. She was not so we called for IV therapy to come do a scalp draw. They said it could be an hour before they got there which would be to late because it's a timed draw (4 hours after his shot). Praise God that another lady came it to look at Josiah. She shut all the light out and brought our a little red light to put under his hands to get a better look at his veins. She was able to get his blood. He gave her just the right amount before he stopped bleeding. He was able to sleep through part of it to. That makes it so much easier for me.
Unfortunately his level came back below "therapeutic" which is what it needs to be. Now I have to increase his shot dosage to .07 in the am and .06 (the same) in the pm. So back to Mary Bridge to get his blood drawn again today. Then we will head off to the Cardiologist to take a look at his heart.
Every appointment I have I take one of the other children with me. This gives them a chance to feel included in Josiah's care and it also gives them some special one on one (almost) time with mommy. Today is Isaac's turn.
8-17-2011
I still am having to give Josiah Lovenox shots twice a day.
I am so ready to be moved in a settled. It seems like God has other plans. I realized today that the reason I'm upset about not being settled yet is because I want to be settled. Who am I to question the plan God has for me? Forgive me Lord for not being content with the road you have me on. For wanting to be in control of what my days look like.
It just dawned on me. For the last four years I've been out of control as far as how I would like my days to look like. We bought this wonderful house and I had high hopes of being in control of my days once again. I guess it's just not time yet. Perhaps I should give up the idea of being in control! Lord help me!
I am so ready to be moved in a settled. It seems like God has other plans. I realized today that the reason I'm upset about not being settled yet is because I want to be settled. Who am I to question the plan God has for me? Forgive me Lord for not being content with the road you have me on. For wanting to be in control of what my days look like.
It just dawned on me. For the last four years I've been out of control as far as how I would like my days to look like. We bought this wonderful house and I had high hopes of being in control of my days once again. I guess it's just not time yet. Perhaps I should give up the idea of being in control! Lord help me!
I can't believe this...
8-17-2011 I took Josiah to Good Sam Lab to get his blood drawn since the last lab did the wrong test. Can you believe they couldn't get a draw! They poked and poked and noth'n. I was not a happy mommy.
Now I get to go somewhere else and try again tomorrow. This is not fun! I hate watching my baby get poked.
Now I get to go somewhere else and try again tomorrow. This is not fun! I hate watching my baby get poked.
Monday, August 15, 2011
Hang'n in there...
Hang'n in there
I about lost it when I was informed that the lab that drew Josiah's blood didn't do the right test. They had to poke him three different times to get enough blood and they spent a LONG time trying to figure out the test that was supposed to be done and it was all for nothing. Now I have to take him again this week to have his blood drawn again. You better believe I'm not going back to that lab.
Josiah is doing everything he should be doing. He's gaining weight and his heart is not trying to close the hole that was made. He's a little fighter.
I have hard days now and then. I struggle with being overwhelmed with everything that is going on in our lives. Moving is difficult. Trying to think seems impossible at times. I have managed to almost completely arrange child care for while Josiah recovers from his surgery. The next thing to try and tackle is planning meals for 3-4 weeks.
Please pray for Ashley (Josiah's almost 2 year old sister). Ever since I was gone for 9 days at the hospital she is extremely clingy (not like her to be that way). She is going to need a HUGE amount of God's grace to make it through Josiah's long recovery.
I about lost it when I was informed that the lab that drew Josiah's blood didn't do the right test. They had to poke him three different times to get enough blood and they spent a LONG time trying to figure out the test that was supposed to be done and it was all for nothing. Now I have to take him again this week to have his blood drawn again. You better believe I'm not going back to that lab.
Josiah is doing everything he should be doing. He's gaining weight and his heart is not trying to close the hole that was made. He's a little fighter.
I have hard days now and then. I struggle with being overwhelmed with everything that is going on in our lives. Moving is difficult. Trying to think seems impossible at times. I have managed to almost completely arrange child care for while Josiah recovers from his surgery. The next thing to try and tackle is planning meals for 3-4 weeks.
Please pray for Ashley (Josiah's almost 2 year old sister). Ever since I was gone for 9 days at the hospital she is extremely clingy (not like her to be that way). She is going to need a HUGE amount of God's grace to make it through Josiah's long recovery.
Monday, August 8, 2011
Trust and Obey...for there is no other way...
I took Josiah to the cardiologist on Friday. The hole from the septostomy is still nice and wide open. That hole is what is keeping him alive and allowing oxygen to flow through out his little body. He continues to be stable. His surgery has been scheduled for September 15th. In the mean time he will have weekly appointments to make sure he continues to stay stable as well as monitoring his oxygen level from home. He gets shots twice a day as well. His poor little legs are all bruised and my heart breaks every time I have to poke him.
I'm just now able to read through the guest book. The morning after I got home from the hospital I got really sick with mastitis. I was in bed for two days and it took several more before I felt fully functional again. Thanks for your support. This is a terribly difficult time and I'm so grateful for faithful friends and family to pray and offer encouraging words. At times I find myself just frozen, looking to my Lord...but speechless. I'm so grateful that I can trust my Heavenly Father.
I'm just now able to read through the guest book. The morning after I got home from the hospital I got really sick with mastitis. I was in bed for two days and it took several more before I felt fully functional again. Thanks for your support. This is a terribly difficult time and I'm so grateful for faithful friends and family to pray and offer encouraging words. At times I find myself just frozen, looking to my Lord...but speechless. I'm so grateful that I can trust my Heavenly Father.
Tuesday, July 26, 2011
Double Outlet Right Ventrical with Transpostition of the Great Arteries...WHAT?????
Something is not right!
I woke up this morning and started my day as usual. It was about 9 AM when Josiah nursed well. I needed to get a few things done so I packed up the troops and headed out and about. I came back shortly after noon and I tried to nurse Josiah again but he just wasn't interested. I couldn't get him to eat much.
Ashley hadn't been feeling well and was particularly needy. Elizabeth ended up holding Josiah a lot so I could tend to Ashley. I noticed he was a bit fussy. But was still easily consoled. I kept offing him the breast and he continued to refuse. I wasn't to concerned until about 8 pm when he vomited. It was a thick mucusy/cottage cheese throw up. I know he hadn't eaten good since the morning so his body was rejecting even that. I assumed he must have caught what ever yuck Ashley has and his little body was fighting it.
I had a sick feeling in my gut that something was wrong. Not wanting to over dramatize the situation I determined that if I could get him to keep some pediolite down that I would not need to take him to the ER. So I started giving him 2 oz of pediolite every couple of hours. It took about an hour to get him to take 2 oz with the doper. I tried to give it to him in a bottle but he wouldn't such it.
When I woke up at 4 am to give Josiah his next 2 oz dose of pediolite I noticed his breathing had changed. He was grunting/moaning with every breath.
I got on line and was able to make a doctor's appointment for him at 8:15 am.
Hans left for work and my mom came over to stay with the other children while I took Josiah to the doctor. That is where the whirl wind began. They weighed Josiah (6 lb 10 oz). They put the thing on his toe to read his blood oxygen level and it was about 37. When they put an oxygen mask on him his level didn't change. Dr Grub said, "we need to transport him to Mary Bridge. I'm 99% sure it has to do with his heart"
So off we went. Josiah and I in the aid car. I called Hans and he said he would meet me there. It was kind of like a dream. I could tell the paramedics and nurses were trying to down play his condition and talking to me to distract me from the fact that I was holding a baby who was dying. I would answer their questions know what they were doing but going along with it.
Once at Mary Bridge they were starting to prep for all these tests to figure out why his oxygen level was so low. I requested "Please can you wait to give him a spinal tap and antibiotics until you look at his heart" The doc basically said no she didn't want to wait that long. She didn't feel like they had time because he was so very sick. So I went to the bathroom and prayed, "God Josiah is yours. Have your way with him." When I came back they had him hooked up to ultra sound machine and where checking out his heart. Praise the Lord he didn't end up having to have the spinal tap or antibiotics!
What they found was Josiah's great vains were attached to the wrong side of his heart. They were not equipped to handle this situation so they transported him to Children's Hospital in Seattle. I was not able to ride with him. Hans and I made our way to Children's.
When we got there we could not see Josiah for several hours. It was a very agonizing wait. Finally someone came out and explained that when Josiah got there he was so very sick (aka - close to death) that they had to do an emergency procedure (I can't remember what it was called) to save his life. They whet through and artery in his groin and punched a hole in his heart. They didn't wait for us to sign the consent. There was no time for that.
The next time we saw our sweat Josiah he was completely motionless with all kinds of IV's attached to him, as well as a tube up his nose that when down to his stomach and a tube down his throat that was breathing for him.
We spent the evening crying out to God and looking to Him for strength. Our hearts were broken and our eyes were burning. We don't want our son to die. "God we give Josiah to You. Let his life bring glory to You. Have your way with Him."
Hans and I were able to stay in one of the sleeper rooms located one floor up from the ICU that Josiah was in. The disposition of his great arteries was confirmed. It's going to be a long hard road. God help us!
July 21st 2011
So yesterday was save Josiah's life. Today is try and get him stable.
I can't even describe the emotions that go along with a diagnosis of your two week old having a heart defect. It's hard to even think. It really is like being in a tornado. Our hearts know that God is in control. And we trust Him. But our eyes will not stop crying.
I try and be with Josiah as much as possible. I try and talk to him so he knows that I am there. He is not stable enough for me to hold. I try not to cry while talking so he can recognize my voice. That is not easy to do. It's a challenge to even talk. I don't feel like talking but my son needs to know that I'm there.
Today they were able to lower some of the meds he is on. That's a small step in the right direction.
Saturday, July 23, 2011
Progress
Josiah made it through his procedure yesterday. They went up through a vain on one side of his groin and an artery on the other side with a camera and die's to get a better look at his heart.
They were just confused with what they were seeing with the ecco. Now we know why. They were seeing exactly what they thought they were seeing. It just didn't make any sense to them because it does not fit the normal conditions of his heart defect. His great arteries are transposed, but in addition he has two of the three conditions to be classified a DORV (double outlet right ventricle). He has a hole in the upper part of his right and left ventricle which allows bold to flow from the RV to the pulmonary artery which increases the blood pressure to the lungs.
He also has both his coronary arteries attached to the same "sinus" in his aorta. In addition the LAD (left anterior descending) artery is connected to the wrong coronary which is located right in between his great arteries which really complicates things. The cardiologist said it will be tricky, but it's doable.
30 cardiologist/surgeons will be meeting early Monday morning to discuss the best way to solve his problem. Our family never does anything half way...the card said he only sees this kind of thing once every 8 or 9 years. So they were seeing what they thought they were seeing with the eccos. It was just hard for them to believe because it's so rare.
Today: our goal for Josiah is to get his breathing tube out. He was given about a teaspoon of breast milk (via his nose) last night and seemed to tolerate it. We will know after rounds (late morning) about his tube. He stabilized well after his procedure last night. I tell him, "stay strong little buddy. Keep fighting!" He's a strong little guy.
July 23rd 2011
They are discussing the possibility of taking his breathing tube out today. We have to wait for rounds which can take several hours to get to. It was almost noon yesterday when we did rounds. God speed. Josiah is so sick of that tube.
I get to see my other little blessings today. I miss them so much! They will be able to come back to the ICU to see Josiah.
July 23rd 2011
Today Josiah was able to get his breathing tube removed! He was also able to nurse for the first time since Tuesday morning.
I know he is still in need of surgery but it has been so great to see him take a little break from his misery. He will endure so much more next week but for now he's a pretty happy boy.
July 26th 2011
Out of ICU
Josiah has been stable for a couple of days so last night they moved us out of the ICU. He got all his IV & PIC lines taken out. The only down side to that is now the nurses have to bug him to get all his vitals every four hours.
They had to draw his blood this morning. It was an agonizing experience. After 30 minutes of poking him and failing to hit a vain they finally called someone to come and do a scalp draw.
He's off all his meds now except for the loganox for the blood clot that is in his leg. That is a shot that has to be given twice a day for a month. They will teach me how to give it before I leave.
SURGICAL PLAN
Because his surgery is so complex they want to give his little heart a chance to grow. He will be monitored very closely while we wait. They are estimating to do the surgery in one to two months depending on how long he remains stable.
This will require frequent doc appointments until then.
7-26-2011
Today was a hard day for Josiah (and mom). He started the day with a blood draw. They poked him for 30 minutes and were unsuccessful. They called someone who was able to give him a scalp draw. NOT FUN! I think he did better than me though. The rest of the day just seemed to be one interruption after another and the poor boy never got any good rest. He was crying and for the first time in his life I was unable to console him. He's finally sleeping soundly about 7:30 pm. Lord help us get through the rest of our time hear.
I woke up this morning and started my day as usual. It was about 9 AM when Josiah nursed well. I needed to get a few things done so I packed up the troops and headed out and about. I came back shortly after noon and I tried to nurse Josiah again but he just wasn't interested. I couldn't get him to eat much.
Ashley hadn't been feeling well and was particularly needy. Elizabeth ended up holding Josiah a lot so I could tend to Ashley. I noticed he was a bit fussy. But was still easily consoled. I kept offing him the breast and he continued to refuse. I wasn't to concerned until about 8 pm when he vomited. It was a thick mucusy/cottage cheese throw up. I know he hadn't eaten good since the morning so his body was rejecting even that. I assumed he must have caught what ever yuck Ashley has and his little body was fighting it.
I had a sick feeling in my gut that something was wrong. Not wanting to over dramatize the situation I determined that if I could get him to keep some pediolite down that I would not need to take him to the ER. So I started giving him 2 oz of pediolite every couple of hours. It took about an hour to get him to take 2 oz with the doper. I tried to give it to him in a bottle but he wouldn't such it.
When I woke up at 4 am to give Josiah his next 2 oz dose of pediolite I noticed his breathing had changed. He was grunting/moaning with every breath.
I got on line and was able to make a doctor's appointment for him at 8:15 am.
Hans left for work and my mom came over to stay with the other children while I took Josiah to the doctor. That is where the whirl wind began. They weighed Josiah (6 lb 10 oz). They put the thing on his toe to read his blood oxygen level and it was about 37. When they put an oxygen mask on him his level didn't change. Dr Grub said, "we need to transport him to Mary Bridge. I'm 99% sure it has to do with his heart"
So off we went. Josiah and I in the aid car. I called Hans and he said he would meet me there. It was kind of like a dream. I could tell the paramedics and nurses were trying to down play his condition and talking to me to distract me from the fact that I was holding a baby who was dying. I would answer their questions know what they were doing but going along with it.
Once at Mary Bridge they were starting to prep for all these tests to figure out why his oxygen level was so low. I requested "Please can you wait to give him a spinal tap and antibiotics until you look at his heart" The doc basically said no she didn't want to wait that long. She didn't feel like they had time because he was so very sick. So I went to the bathroom and prayed, "God Josiah is yours. Have your way with him." When I came back they had him hooked up to ultra sound machine and where checking out his heart. Praise the Lord he didn't end up having to have the spinal tap or antibiotics!
What they found was Josiah's great vains were attached to the wrong side of his heart. They were not equipped to handle this situation so they transported him to Children's Hospital in Seattle. I was not able to ride with him. Hans and I made our way to Children's.
When we got there we could not see Josiah for several hours. It was a very agonizing wait. Finally someone came out and explained that when Josiah got there he was so very sick (aka - close to death) that they had to do an emergency procedure (I can't remember what it was called) to save his life. They whet through and artery in his groin and punched a hole in his heart. They didn't wait for us to sign the consent. There was no time for that.
The next time we saw our sweat Josiah he was completely motionless with all kinds of IV's attached to him, as well as a tube up his nose that when down to his stomach and a tube down his throat that was breathing for him.
We spent the evening crying out to God and looking to Him for strength. Our hearts were broken and our eyes were burning. We don't want our son to die. "God we give Josiah to You. Let his life bring glory to You. Have your way with Him."
Hans and I were able to stay in one of the sleeper rooms located one floor up from the ICU that Josiah was in. The disposition of his great arteries was confirmed. It's going to be a long hard road. God help us!
July 21st 2011
So yesterday was save Josiah's life. Today is try and get him stable.
I can't even describe the emotions that go along with a diagnosis of your two week old having a heart defect. It's hard to even think. It really is like being in a tornado. Our hearts know that God is in control. And we trust Him. But our eyes will not stop crying.
I try and be with Josiah as much as possible. I try and talk to him so he knows that I am there. He is not stable enough for me to hold. I try not to cry while talking so he can recognize my voice. That is not easy to do. It's a challenge to even talk. I don't feel like talking but my son needs to know that I'm there.
Today they were able to lower some of the meds he is on. That's a small step in the right direction.
Saturday, July 23, 2011
Progress
Josiah made it through his procedure yesterday. They went up through a vain on one side of his groin and an artery on the other side with a camera and die's to get a better look at his heart.
They were just confused with what they were seeing with the ecco. Now we know why. They were seeing exactly what they thought they were seeing. It just didn't make any sense to them because it does not fit the normal conditions of his heart defect. His great arteries are transposed, but in addition he has two of the three conditions to be classified a DORV (double outlet right ventricle). He has a hole in the upper part of his right and left ventricle which allows bold to flow from the RV to the pulmonary artery which increases the blood pressure to the lungs.
He also has both his coronary arteries attached to the same "sinus" in his aorta. In addition the LAD (left anterior descending) artery is connected to the wrong coronary which is located right in between his great arteries which really complicates things. The cardiologist said it will be tricky, but it's doable.
30 cardiologist/surgeons will be meeting early Monday morning to discuss the best way to solve his problem. Our family never does anything half way...the card said he only sees this kind of thing once every 8 or 9 years. So they were seeing what they thought they were seeing with the eccos. It was just hard for them to believe because it's so rare.
Today: our goal for Josiah is to get his breathing tube out. He was given about a teaspoon of breast milk (via his nose) last night and seemed to tolerate it. We will know after rounds (late morning) about his tube. He stabilized well after his procedure last night. I tell him, "stay strong little buddy. Keep fighting!" He's a strong little guy.
July 23rd 2011
They are discussing the possibility of taking his breathing tube out today. We have to wait for rounds which can take several hours to get to. It was almost noon yesterday when we did rounds. God speed. Josiah is so sick of that tube.
I get to see my other little blessings today. I miss them so much! They will be able to come back to the ICU to see Josiah.
July 23rd 2011
Today Josiah was able to get his breathing tube removed! He was also able to nurse for the first time since Tuesday morning.
I know he is still in need of surgery but it has been so great to see him take a little break from his misery. He will endure so much more next week but for now he's a pretty happy boy.
July 26th 2011
Out of ICU
Josiah has been stable for a couple of days so last night they moved us out of the ICU. He got all his IV & PIC lines taken out. The only down side to that is now the nurses have to bug him to get all his vitals every four hours.
They had to draw his blood this morning. It was an agonizing experience. After 30 minutes of poking him and failing to hit a vain they finally called someone to come and do a scalp draw.
He's off all his meds now except for the loganox for the blood clot that is in his leg. That is a shot that has to be given twice a day for a month. They will teach me how to give it before I leave.
SURGICAL PLAN
Because his surgery is so complex they want to give his little heart a chance to grow. He will be monitored very closely while we wait. They are estimating to do the surgery in one to two months depending on how long he remains stable.
This will require frequent doc appointments until then.
7-26-2011
Today was a hard day for Josiah (and mom). He started the day with a blood draw. They poked him for 30 minutes and were unsuccessful. They called someone who was able to give him a scalp draw. NOT FUN! I think he did better than me though. The rest of the day just seemed to be one interruption after another and the poor boy never got any good rest. He was crying and for the first time in his life I was unable to console him. He's finally sleeping soundly about 7:30 pm. Lord help us get through the rest of our time hear.
Josiah's Birth Story
On May 13th we officially closed on our house after a two year attempt to buy. We moved in the very same day. We moved our bed and a few items of clothing and some food. The very next day we set to work. We tore our walls. We ripped up the floor. We ran wire for new lighting. We mudded holes. We painted everything (all but two closets, one bathroom and the pantry/utility room). We installed a tankless water heater. We put in kitchen cabinets. We put laminate down (twice - because of a flood from the dishwasher that destroyed half the floor the day after we installed it) And many little various projects. We did it all ourselves with the exception on installing the carpet and the counter tops. We finished the last of the rehab on July 4th 2011. Now to move our stuff and get settled before our baby is born. My due date it July 22nd. We've got plenty of time right?...WRONG!!!! July 5th at 7 AM my water broke. I was not in labor. Ann came to start my antibiotics because I was group strep B positive. I had to have a dose every four hours until baby was born. I ended up having to have 4 doses total. When she checked me I was a 3. I took some homeopathic stuff to help get my labor going. A couple hours I was still a 3. She was able to stretch me from a 3 to a 7. A couple of hours I was still at a 7. I did have a few contractions but still a 7. I went for a walk...I had several good contractions...Nothing that kept me from walking and talking...ahh now I'm a 9 maybe 9 and 1/2. I tried to push the baby out but wasn't able to. So up and down the stairs I went. Up and down, up and down, up and down...In the birth tub I go. Contractions started picking up now. And they were the pushing kind! 30 minutes later (about 10 contractions) I held my sweet baby in my arms. Morgan checked to see if we had and boy or a girl. Praise the Lord we Isaac has a brother! Morgan got to cut the cord. And Isaac (who had gone to bed an hour before) found his baby brother wrapped in his special blanket the next morning. He gave it to Josiah.
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