Today's care conference went well. We were joined in the conference room with all the "big wigs" regarding Connor's care. They were all able to answer our specific questions and they were also able to make their case regarding Little Bug's surgery. The ultimate decision was for us to wait until mid September for Little Bug's heart repair. The reason for this is that he must gain more weight so that his overall health is better and that his lungs are stronger and more clear. He is getting there with overall health increases, but he's not there yet. Proper nutrition and adequate weight gain are going to be the key to his ultimate success.
Our big news is that for two days straight Connor gained weight. Yippee........Bring out the circus clowns, we're having a parade in his honor!!!!! He gained 1 ounce on Thursday and he gained an ounce and a half today!!!! Way to go Little Bug. Since we have decided to move forward with the plan for surgery being in September, the next question to conqure was, "When do we get to go home?" Basically, Connor has to prove his weight gain and reach his goals with feeding. The goals are 30 calories per ounce, which he has met and 27 ml's per hour for volume. He is currently at 22 ml's per hour and we are planning to go up 1ml every other day. We just have to make sure not to rush the little bug because he is awfully sensitive to sudden changes in his system. We figure we should be shooting for going home sometime the week of the 19th if everything stays on course.
WOW!!!!! We actually have something to shoot for as a goal for going home!!!! This feels like a major victory for us. Please pray that Little Bug continues to tolerate his feed changes and that we can stay on the fast track towards home. I will write more tomorrow, but I had to update before going to bed. Daddy is in with Connor at the moment doing his final binki trainer with 10 cc's of mama's milk before bed time. We're having so much fun feeding him and watching him relearn the process of eating. It won't be long before we start to see this precious child take off and do mighty things!!! We are so proud of our son. We love you Little Bug!!!!
Lovebug Hugs,
Lori
Friday, June 09, 2006
Wednesday, June 07, 2006
Much overdue update
It is definitely getting more and more difficult to keep up on daily blogging while we are here in the surgical unit. I know you are all anxious for updates on Little Bug and, believe me, I am anxious to give them, but for the moment it has been really hard to find time to get away from his room and from the various consultations we have. Bear with me as I find a balance in getting everything done in a timely manner.
The beginning of this week brought yet another challenge. Connor began pooping with great furry and it was and still is filled with blood. Yes, this is very concerning to us, but the docs seem to think that he could have a little ficher (sp?) on the upper part of his little bottom or that he could possibly be allergic to milk proteins. We are watching it carefully and they have asked me to give up dairy and soy just in case it is a milk allergy. I am finding it hard to believe that this would be the case after this much time on breast milk, but I have conceded to the possibility and have given up dairy for the time being. As we test his poops they are all coming up positive for blood. They say this could last up to two weeks or so. Yikes, if it isn’t one thing it’s ten!!!
Another issue of particular concern is his weight gain problems. He is still hovering at a very low weight; 9 lbs 10.7 ounces. We are trying desperately to get him to his goal calories, which is 30 and to begin increasing his volume slowly. He just doesn’t seem to be responding to these increases with any gaining. Uuugghhh, this is very frustrating for us. We realize that each day that goes by and he doesn’t gain weight means another day further away from his heart surgery. We asked the doctors on Monday to put together what they call a Care Conference. This is where all of his doctors from the different departments all sit down and put their heads together with us and we put a plan together for Connor. We have some very specific concerns that must be addressed and we are praying that Friday will be the day to finally get some answers. We haven’t demand much from the docs, but it is coming down to brass tacks for us and we need to know what the plan for his heart repair is. The meeting will be held on Friday at 2pm. Please pray that all goes well, and that all of our concerns and questions are addressed.
Over the past days and weeks Little Bug has continued to have the little eye darting episodes that they once thought were seizure activity and he has started shaking his head when it is turned in a particular manner. Yesterday they had the Neurologist come and consult on these issues and it was quite informative. They don’t seem to be concerned at all about the shaking because it seems to be consistent with Connor finally starting to us some of his neck muscles and the shaking is more than likely a muscle spasm. The eye darting might be more of an immaturity issue and a developmental concern rather than seizures. The Neurologist was concerned about his growth issues and about his lack of weight gain in regards to his brain development. Connor had a difficult time performing the tasks that the doc expected him to be able to do. The doctor decided to refer us to an ophthamolic neurologist to come and do an assessment. Believe me, my heart is screaming out, “What’s next Lord?????” In Connor’s defense, I just wish that this whole hospital community could give him the benefit of the doubt for once. For crying out loud he has been laying flat on his back for months. He has been extremely ill, and he has been sedated so much of the time, no wonder he is behind. Forgive my angst. I’m just frustrated and I want so desperately to protect my son from the judgments of others. On the other hand I don’t want to put my head in the sand and not address the reality of what we are dealing with, but there has got to be a balance. Lord, please help us see your will and your way in all of this. We so desperately need some encouragement. Please provide a fresh wind of hope for us!!!!
We were blessed with lots of great visits over the weekend and so far this week has been busy with lots of friends. Grandpa and Grandma M. stopped by on Saturday and we all went out to lunch together. It was nice to have a volunteer stop by and watch Connor so we could get out for a while. Boy, I can’t wait until Connor is well enough to join us on all our ventures out of this hospital. We also got to visit with hospital pals John and Susan and little Brent as they are back here at the hospital with Brent. He is here fighting off some infectious processes and some low counts due to his chemo. Continue to pray that little Brent can fight his way back to better health soon. Daddy got back to us on Sunday and stayed until Tuesday morning when he had to leave to go back down to Tacoma and do some work at the Base. We love it when daddy is here with us to make us laugh and keep us company. While Randy was here Little Bug underwent another upper GI to see why his GJ tube was clogging so much. When the test was done the tube was working perfectly and they couldn’t see any problems.
Tuesday morning we enjoyed a short visit from hospital pal Susie (Maggie’s mom) as they were here for their cardiac clinic visit. Little Maggie is doing well, but she also needs to gain weight. Continue to pray that these little kiddo’s can start to pack on the pounds. By the way Susie, the “Bug Frame” is just perfect, Thanks!!!
Today was an absolute whirlwind!!! Our morning started out early as Connor didn’t sleep so well, and then we were visited by Auntie Jacqueline, Austin & Dallas. We hadn’t seen them in a while so it was fabulous to get a quick visit before they headed out to the Governor’s Mansion. We can’t wait to see you on your return trip back up North. Auntie Maureen showed up at the same time so we had quite a room full. Boy we like to party around here. Before Auntie Maureen had to leave we heard an announcement in the room that the Mariner’s were going to be in the Playroom and all were invited to come and see them. Maureen said, “Hey, do you think we should go down and let Little Bug meet those Mariner’s?” It didn’t take me long to get Connor unhooked from all his cords and pumps and we were on our way!! Connor got a little Mariner duffle bag with the Mariner Moose stuffed toy and a baseball that we had signed by one of the managers and by the pitcher. We got lots of pictures and there was a lot of hubbub in the air. I will post pictures tomorrow of our fun day.
Immediately after returning from the playroom we were visited by yet another special friend. Walt and Alvina from Dryden, WA came across the pass to meet Little Bug. We had so much fun visiting and catching up while Alvina snuggled with Connor. Thanks for the great baseball outfit for Connor and the Starbursts bag has already been opened. Thanks for the treats.
Grandma M. showed up right after that for an afternoon visit. Whew, we are popular today!!! It’s always so nice to have lots of love to get us through our long days. Thanks Mom, for coming and being an encouragement to me and as you say, “An infusion of hope!” We were also visited by my cousin Tony. WOW, what a day. Thank you one and all for a great day!!!!
Tomorrow should be a little mellower with a consult from the Ophthalmology department and a visit from Aunt Kathy. She wanted to come down and stay the night so that we could get a good night sleep. Thanks Kathy, I can’t wait to see you. Thanks Dad and Mom R. for watching Abbey this week too. We are so overwhelmed with blessings of how everyone is jumping in to help us with maintaining life. We are forever grateful for so much love and support.
Well, I am off to bed now. I will post again tomorrow with pictures of the last few days.
All our Lovebug Hugs,
Lori
The beginning of this week brought yet another challenge. Connor began pooping with great furry and it was and still is filled with blood. Yes, this is very concerning to us, but the docs seem to think that he could have a little ficher (sp?) on the upper part of his little bottom or that he could possibly be allergic to milk proteins. We are watching it carefully and they have asked me to give up dairy and soy just in case it is a milk allergy. I am finding it hard to believe that this would be the case after this much time on breast milk, but I have conceded to the possibility and have given up dairy for the time being. As we test his poops they are all coming up positive for blood. They say this could last up to two weeks or so. Yikes, if it isn’t one thing it’s ten!!!
Another issue of particular concern is his weight gain problems. He is still hovering at a very low weight; 9 lbs 10.7 ounces. We are trying desperately to get him to his goal calories, which is 30 and to begin increasing his volume slowly. He just doesn’t seem to be responding to these increases with any gaining. Uuugghhh, this is very frustrating for us. We realize that each day that goes by and he doesn’t gain weight means another day further away from his heart surgery. We asked the doctors on Monday to put together what they call a Care Conference. This is where all of his doctors from the different departments all sit down and put their heads together with us and we put a plan together for Connor. We have some very specific concerns that must be addressed and we are praying that Friday will be the day to finally get some answers. We haven’t demand much from the docs, but it is coming down to brass tacks for us and we need to know what the plan for his heart repair is. The meeting will be held on Friday at 2pm. Please pray that all goes well, and that all of our concerns and questions are addressed.
Over the past days and weeks Little Bug has continued to have the little eye darting episodes that they once thought were seizure activity and he has started shaking his head when it is turned in a particular manner. Yesterday they had the Neurologist come and consult on these issues and it was quite informative. They don’t seem to be concerned at all about the shaking because it seems to be consistent with Connor finally starting to us some of his neck muscles and the shaking is more than likely a muscle spasm. The eye darting might be more of an immaturity issue and a developmental concern rather than seizures. The Neurologist was concerned about his growth issues and about his lack of weight gain in regards to his brain development. Connor had a difficult time performing the tasks that the doc expected him to be able to do. The doctor decided to refer us to an ophthamolic neurologist to come and do an assessment. Believe me, my heart is screaming out, “What’s next Lord?????” In Connor’s defense, I just wish that this whole hospital community could give him the benefit of the doubt for once. For crying out loud he has been laying flat on his back for months. He has been extremely ill, and he has been sedated so much of the time, no wonder he is behind. Forgive my angst. I’m just frustrated and I want so desperately to protect my son from the judgments of others. On the other hand I don’t want to put my head in the sand and not address the reality of what we are dealing with, but there has got to be a balance. Lord, please help us see your will and your way in all of this. We so desperately need some encouragement. Please provide a fresh wind of hope for us!!!!
We were blessed with lots of great visits over the weekend and so far this week has been busy with lots of friends. Grandpa and Grandma M. stopped by on Saturday and we all went out to lunch together. It was nice to have a volunteer stop by and watch Connor so we could get out for a while. Boy, I can’t wait until Connor is well enough to join us on all our ventures out of this hospital. We also got to visit with hospital pals John and Susan and little Brent as they are back here at the hospital with Brent. He is here fighting off some infectious processes and some low counts due to his chemo. Continue to pray that little Brent can fight his way back to better health soon. Daddy got back to us on Sunday and stayed until Tuesday morning when he had to leave to go back down to Tacoma and do some work at the Base. We love it when daddy is here with us to make us laugh and keep us company. While Randy was here Little Bug underwent another upper GI to see why his GJ tube was clogging so much. When the test was done the tube was working perfectly and they couldn’t see any problems.
Tuesday morning we enjoyed a short visit from hospital pal Susie (Maggie’s mom) as they were here for their cardiac clinic visit. Little Maggie is doing well, but she also needs to gain weight. Continue to pray that these little kiddo’s can start to pack on the pounds. By the way Susie, the “Bug Frame” is just perfect, Thanks!!!
Today was an absolute whirlwind!!! Our morning started out early as Connor didn’t sleep so well, and then we were visited by Auntie Jacqueline, Austin & Dallas. We hadn’t seen them in a while so it was fabulous to get a quick visit before they headed out to the Governor’s Mansion. We can’t wait to see you on your return trip back up North. Auntie Maureen showed up at the same time so we had quite a room full. Boy we like to party around here. Before Auntie Maureen had to leave we heard an announcement in the room that the Mariner’s were going to be in the Playroom and all were invited to come and see them. Maureen said, “Hey, do you think we should go down and let Little Bug meet those Mariner’s?” It didn’t take me long to get Connor unhooked from all his cords and pumps and we were on our way!! Connor got a little Mariner duffle bag with the Mariner Moose stuffed toy and a baseball that we had signed by one of the managers and by the pitcher. We got lots of pictures and there was a lot of hubbub in the air. I will post pictures tomorrow of our fun day.
Immediately after returning from the playroom we were visited by yet another special friend. Walt and Alvina from Dryden, WA came across the pass to meet Little Bug. We had so much fun visiting and catching up while Alvina snuggled with Connor. Thanks for the great baseball outfit for Connor and the Starbursts bag has already been opened. Thanks for the treats.
Grandma M. showed up right after that for an afternoon visit. Whew, we are popular today!!! It’s always so nice to have lots of love to get us through our long days. Thanks Mom, for coming and being an encouragement to me and as you say, “An infusion of hope!” We were also visited by my cousin Tony. WOW, what a day. Thank you one and all for a great day!!!!
Tomorrow should be a little mellower with a consult from the Ophthalmology department and a visit from Aunt Kathy. She wanted to come down and stay the night so that we could get a good night sleep. Thanks Kathy, I can’t wait to see you. Thanks Dad and Mom R. for watching Abbey this week too. We are so overwhelmed with blessings of how everyone is jumping in to help us with maintaining life. We are forever grateful for so much love and support.
Well, I am off to bed now. I will post again tomorrow with pictures of the last few days.
All our Lovebug Hugs,
Lori
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