Getting closer and I have been getting butterflies every now and then. =) Wow, I cant wait until next week, then surgery will be over.
Same ole' around here, just waiting. Camden seems to be wreching a bit more, so I know he is ready to get his insides back in place.
"They that wait upon the Lord, shall renew their strength. THey shall mount up with wings as eagles. THey shall run and not be weary, they shall walk and not faint. Teach me Lord to wait..."
....somewhere in the Bible ;p
Sunday, October 25, 2009
Sunday, October 18, 2009
Surgery is October 30th
We will be going in the hospital on the 29th so he can get cleaned out and ready to go....
Looks like some colon is behind his heart. Dr. W will be patching his diaphragm with gortex again and we will think about doing a more "permanent" surgery when he is older and stronger.
For now focusing on getting the intestines back where they should be.
They are not concerned with his testes at all right now.
Increasing his milk helped and he gained 7 ounces this week. :) Up to 16.11
Still the same orally, although he did lick a piece of my ham today. Weird. Of course he did start freaking when the tiniest piece broke off into his mouth ... I was quick to get it out. But for him to lick something other than plastic or cloth is huge.
Short and sweet, need to settle in for the night. If you remember, please keep Camden in your prayers with his upcoming surgery. Thank you :)
Looks like some colon is behind his heart. Dr. W will be patching his diaphragm with gortex again and we will think about doing a more "permanent" surgery when he is older and stronger.
For now focusing on getting the intestines back where they should be.
They are not concerned with his testes at all right now.
Increasing his milk helped and he gained 7 ounces this week. :) Up to 16.11
Still the same orally, although he did lick a piece of my ham today. Weird. Of course he did start freaking when the tiniest piece broke off into his mouth ... I was quick to get it out. But for him to lick something other than plastic or cloth is huge.
Short and sweet, need to settle in for the night. If you remember, please keep Camden in your prayers with his upcoming surgery. Thank you :)
Monday, October 12, 2009
Well, they're movin on down.... ;0)
Today we went to urologist and optimologist.
The uro. explained that if the testes were up in the belly somewhere, the surgery may be more involved and he wasnt sure if it was wise to do it at the same time as the diaphragm repair and compromise Camden's recovery. I totally agreed, but of course was wondering about Camden's future with waiting later to do the surgery. Long story short, after we discussed the situation he took a look at Camden and he felt the testes! They were down there, not all the way where they should be, but down there! It now wont be a two step procedure and we are super excited. :)
He had his eyes checked and he is getting the tear duct fixed. He had his eyes dilated because they want to make sure he eyes were healthy first, and they were. Poor Camden looked like he was on something the rest of the day. He was exhausted and fought sleep all day while we were at nemours, but came home, took a nap, and was back to his precious happy self.
The eye doc is pretty open to be there when Camden goes in so we are now just waiting on the surgeon to set a date. Hopefully we can find out a date soon....
Thursday, October 8, 2009
The Family Jewels have been found...
blood results say there are testes :) What a relief!! Thank you, Lord. One less thing to think about. So when he goes in for surgery they will be umm fixing things in that department.
WE go to see the urologist on Monday to discuss details.
Tomorrow Camden goes for a barium enema. ;( Guess the upper GI didnt show enough. That stinks. I hate for him to go through these tests.
One blessing is that he hasnt been wreching and throwing up anymore than the normal. Actually has just been wretching lots and just throwing up secretions, so not losing calories which is a huge plus since he had not been gaining. I have been sneaking a few mls here and there for the past few weeks and he is starting to gain now. Of course that is making it more difficult for me to keep up with the pumping. :-o It is getting tough...
We are slowly but surely getting things in order to prepare for these next few weeks.
Oh, Camden is clapping! So precious. I sometimes just bawl my eyes out thanking God for his brain function. Being on ECMO for three weeks was such a concern in this area. ( along with many others) He is a smart little booger. ;)
WE go to see the urologist on Monday to discuss details.
Tomorrow Camden goes for a barium enema. ;( Guess the upper GI didnt show enough. That stinks. I hate for him to go through these tests.
One blessing is that he hasnt been wreching and throwing up anymore than the normal. Actually has just been wretching lots and just throwing up secretions, so not losing calories which is a huge plus since he had not been gaining. I have been sneaking a few mls here and there for the past few weeks and he is starting to gain now. Of course that is making it more difficult for me to keep up with the pumping. :-o It is getting tough...
We are slowly but surely getting things in order to prepare for these next few weeks.
Oh, Camden is clapping! So precious. I sometimes just bawl my eyes out thanking God for his brain function. Being on ECMO for three weeks was such a concern in this area. ( along with many others) He is a smart little booger. ;)
Thursday, October 1, 2009
No More Daytime Vent, Nebs.... and more
Since Monday, Camden has officially been off the ventilator all day. Just goes on at nights and we will chill with that for a while and not stress him before surgery. He is doing great with it.
He is also off his albuterol!! No more neb treatments. It is such a small machine compared to most of his things, but it felt great to pack it away. ;) Im just so happy for him...one less thing for him to deal with. =)
We had the upper GI last Monday too. I am still waiting on the blood work results from last week concerning his testes. Hopefully they'll call tomorrow since I have called the last two days. We still go to see the urologist and eye doc before finding out when surgery will be. He is on a slow rate of 80 ml an hour and doing better with that. Having some bad retching moments, but it isn't every feed. Bad days and good days. Breaks my heart to watch it though. I can't wait until this hurdle is over.
Orally he is doing awful. That is basically it. I have been so upset about it and it seems to be getting worse. I try cereal everyday, and he seems to hate it more and more. He is gagging worse now. Today he just lost it and once he gets crying over it there is no more trying. Plus we want to make it a happy time, but how do you do that when he is freaking out and dry heaving ;s ? It seems like such a long road in the eating department, like he will never get there. His spits out pacis and bottle feeding is pretty much a joke too. Now with the surgery I am afraid getting off track with things is going to be a maojor setback.
For now he is hanging in there before getting his diaphragm repaired. He seems to be attached to the feeding pump most of the day and night, but that is what we have to do for him to be able to tolerate it and maintain his weight.
This evening, Marcus and I took the kids on a bike ride in the neighborhood. Camden loved his stroller ride. The weather was so cool and nice and he was just checking everything out. Never fussed and was a sweet boy. Thankyou God for giving me this joy in my life!
He is also off his albuterol!! No more neb treatments. It is such a small machine compared to most of his things, but it felt great to pack it away. ;) Im just so happy for him...one less thing for him to deal with. =)
We had the upper GI last Monday too. I am still waiting on the blood work results from last week concerning his testes. Hopefully they'll call tomorrow since I have called the last two days. We still go to see the urologist and eye doc before finding out when surgery will be. He is on a slow rate of 80 ml an hour and doing better with that. Having some bad retching moments, but it isn't every feed. Bad days and good days. Breaks my heart to watch it though. I can't wait until this hurdle is over.
Orally he is doing awful. That is basically it. I have been so upset about it and it seems to be getting worse. I try cereal everyday, and he seems to hate it more and more. He is gagging worse now. Today he just lost it and once he gets crying over it there is no more trying. Plus we want to make it a happy time, but how do you do that when he is freaking out and dry heaving ;s ? It seems like such a long road in the eating department, like he will never get there. His spits out pacis and bottle feeding is pretty much a joke too. Now with the surgery I am afraid getting off track with things is going to be a maojor setback.
For now he is hanging in there before getting his diaphragm repaired. He seems to be attached to the feeding pump most of the day and night, but that is what we have to do for him to be able to tolerate it and maintain his weight.
This evening, Marcus and I took the kids on a bike ride in the neighborhood. Camden loved his stroller ride. The weather was so cool and nice and he was just checking everything out. Never fussed and was a sweet boy. Thankyou God for giving me this joy in my life!
Tuesday, September 22, 2009
A Happy 8 month birthday....
Well it didn't turn out to be the best birthday for him. ;s We went to see Dr W today and after an xray she found that he has re herniated. Part of his intestine or colon is trying to move back up through the gortex diaphragm into his chest. I had a feeling this was happening with him not being able to tolerate the faster rate of food, but it hearing it today was difficult for me. His testes haven't dropped, he has a clogged tear duct, and he needs to be circumcised, so we are trying to get things in order to do all of it at once. So, busy weeks ahead to prepare for surgeries. In the mean time we will continue to feed at this lower rate and pray he can hold out to get things in order.
Camden is definitely not acting like himself. It takes a lot to get him to smile when normally I cant get him to stop! But he is a trooper as usual.
Well, it was a nice hospital free time while it lasted. ;) Tonight I am thanking Jesus I have Camden home and healthy enough to be able to even have surgery.
Camden is definitely not acting like himself. It takes a lot to get him to smile when normally I cant get him to stop! But he is a trooper as usual.
Well, it was a nice hospital free time while it lasted. ;) Tonight I am thanking Jesus I have Camden home and healthy enough to be able to even have surgery.
Saturday, September 19, 2009
A few steps back....
in the feeding department. Camden still wasnt tolerating his 9am feed, so we have slowed the rate and started an hour later to let his stomach have even more time to digest the continuous night feed. He hasnt vomited like he did since we have done this, so it is helping. Maybe his nissen ( surgery he had to stop things from going up the esophagus) has unwrapped completely or maybe his reflux is just getting worse? He was tolerating feeds better before, so something has changed.
:( Feeding can feel like a daily battle, but I have to focus on the fact that is getting in and he is digesting most of it and still gaining. I am still working with the bottle and cereal and things havent changed much with that. I do know that the little cereal he does get down is more than he does when sucking the bottle.
He is still supposed to be on the vent at night and during the long day naps. It is starting to not be that way. The day goes by and sometimes it just doesnt work out to put him on. It is like you dont want to interrupt him when he finally passes out, or you think he is just taking a cat nap and the nap ends up being his long one. I have many excuses to give Dr H. ;) Usually he goes on one time a day for a short time and he has been on EVERY night. I am obeying in that department. :) We go back to the pulm at the end of the month to see the next step with the vent.
Anyway, he has done well. Not one disturbing episode. God is good and I cant think about it without crying. My little miracle.
We are just hanging out as a family minus Micah tonight. She went home with Nana. Our regular night nurse who we thought was gone for good is supposed to be coming in at 11pm tonight. Supposedly she will work some nights for the rest of Sept, then will not be doing night shifts anymore so we probably wont be seeing her much after that. We will miss her! Very difficult having different people coming in and out every night, but God will work it out. My day nurses may be gone in a few months, but he should have night nurses much longer. I pray that we will have a couple of regular nurses so he doesnt have to wake up to strangers.
This week we go see Dr W his surgeon and will be checking out his diaphragm. We also see the nutritionist so maybe we can think of a better eating plan. And I spoke too soon, he just threw his dinner up so I guess it isnt just breakfast. :(
Busy week, so I may be slacking to get on here but I will try. Thanks to those who continue to pray for us.
:( Feeding can feel like a daily battle, but I have to focus on the fact that is getting in and he is digesting most of it and still gaining. I am still working with the bottle and cereal and things havent changed much with that. I do know that the little cereal he does get down is more than he does when sucking the bottle.
He is still supposed to be on the vent at night and during the long day naps. It is starting to not be that way. The day goes by and sometimes it just doesnt work out to put him on. It is like you dont want to interrupt him when he finally passes out, or you think he is just taking a cat nap and the nap ends up being his long one. I have many excuses to give Dr H. ;) Usually he goes on one time a day for a short time and he has been on EVERY night. I am obeying in that department. :) We go back to the pulm at the end of the month to see the next step with the vent.
Anyway, he has done well. Not one disturbing episode. God is good and I cant think about it without crying. My little miracle.
We are just hanging out as a family minus Micah tonight. She went home with Nana. Our regular night nurse who we thought was gone for good is supposed to be coming in at 11pm tonight. Supposedly she will work some nights for the rest of Sept, then will not be doing night shifts anymore so we probably wont be seeing her much after that. We will miss her! Very difficult having different people coming in and out every night, but God will work it out. My day nurses may be gone in a few months, but he should have night nurses much longer. I pray that we will have a couple of regular nurses so he doesnt have to wake up to strangers.
This week we go see Dr W his surgeon and will be checking out his diaphragm. We also see the nutritionist so maybe we can think of a better eating plan. And I spoke too soon, he just threw his dinner up so I guess it isnt just breakfast. :(
Busy week, so I may be slacking to get on here but I will try. Thanks to those who continue to pray for us.
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