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.
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