Well we had to take Caleb to the hospital last Friday because he seemed to have a stomach ache. After they ran some tests, they found out Caleb had pancreatitis. One of your pancreatic enzymes, lipase, should be 200 and his was 10,000. So needless to say, he wasn't a happy camper. They kept him in the hospital until yesterday. His level is still high, 1800, but it is better than what it was. He isn't allowed anything by mouth or feeding tube until he feels better. Thanks to Aunt Jen for sending updates and thanks to all for your prayers.
Also, we still haven't heard anything regarding the immune tests so when we hear about that we will post too.
God bless you all!!
God bless Caleb!!
Friday, May 30, 2008
Wednesday, May 21, 2008
Advice Needed
Hello all....Sorry for the delay in posts.
So Caleb is continuing to recover from his cleft lip & nose surgery. We have to massage his lip so it desensitizes and hopefully prevents it from scaring.
The reason why we are posting tonight is to try to get as much advice as possible. As most of you know, Caleb spent the first year and a half of his life in the hospital. Therefore, he was in a crib and is behind in his physical development. Caleb is almost two years old and still does not sit up on his own, crawl, drink, or eat baby foods. We know that he is delayed due to living in the hospital and this can effect the sitting (however, he can sit up unsupported for hours). He just can't get himself up. He also has CHARGE in addition to DiGeorge (the immunodeficiency) and we have read that CHARGE delays/effects eating habits. He ate completely by some type of tube (NG, Mic-key button, etc.) until about two months ago when we were given the go ahead to try baby foods. He still gets all of his nutrition via IV and we are doing continuous feeds through his Mic-key to keep his LFT levels down (Liver function levels - keeping his gut from going to sleep). We try to feed him and he will try to prevent anything from going in his mouth. Then, once you get a drink or food in his mouth he will not swallow. We know he has an oral aversion, and know there is not a quick fix. Here is our dilema...we cannot bring early intervention yet into the home, as it is not worth the risk of what we could be exposing Caleb to (i.e. cold, flu, etc.), so we are turning to our fellow bloggers for any advice on therapy that may have worked for them in any of these areas. Please post any ideas that you may have, we would definitely appreciate it.
So Caleb is continuing to recover from his cleft lip & nose surgery. We have to massage his lip so it desensitizes and hopefully prevents it from scaring.
The reason why we are posting tonight is to try to get as much advice as possible. As most of you know, Caleb spent the first year and a half of his life in the hospital. Therefore, he was in a crib and is behind in his physical development. Caleb is almost two years old and still does not sit up on his own, crawl, drink, or eat baby foods. We know that he is delayed due to living in the hospital and this can effect the sitting (however, he can sit up unsupported for hours). He just can't get himself up. He also has CHARGE in addition to DiGeorge (the immunodeficiency) and we have read that CHARGE delays/effects eating habits. He ate completely by some type of tube (NG, Mic-key button, etc.) until about two months ago when we were given the go ahead to try baby foods. He still gets all of his nutrition via IV and we are doing continuous feeds through his Mic-key to keep his LFT levels down (Liver function levels - keeping his gut from going to sleep). We try to feed him and he will try to prevent anything from going in his mouth. Then, once you get a drink or food in his mouth he will not swallow. We know he has an oral aversion, and know there is not a quick fix. Here is our dilema...we cannot bring early intervention yet into the home, as it is not worth the risk of what we could be exposing Caleb to (i.e. cold, flu, etc.), so we are turning to our fellow bloggers for any advice on therapy that may have worked for them in any of these areas. Please post any ideas that you may have, we would definitely appreciate it.
Saturday, May 10, 2008
Clinic Update, Immune Bloodwork, Pics, and Prayers
Hello all. . . we are trying to get more updates on the blog more frequent. Brian got over his sickness so it is me and him again working as a team again to take care of our little man along with a nurse that comes for 8 hours 5 days a week (however-we still should have nursing care more often). But Brian and I do pretty well as long as both of us are healthy.
So Caleb went to cleft-craniofacial clinic last week for a checkup. Unfortunately, do to us being stuck in traffic for a very long time we missed Dr. Losee, but another surgeon saw him and said the healing process looks good. Just keep up the care we are doing. We also talked about speech therapy and audiology therapy with our friend Matt at cleft-craniofacial and Caleb will probably need some therapy but we will have to wait until we get more immune function before Brian and I feel comfortable brining therapists into the home.
Which brings me on to the next topic. We did have blood drawn for immune studies. So pray hard that his T-cells (Immune System) is continuing to grow. As soon as we know anything we will post.
As promised pics.
On a final note, please keep our little friend Jacob Rice (Buddy) and his parents, Nick and Jessica in your prayers. As Jessica's mom said: 'little Buddy hatched his wings and flew to heaven to be with God' on May 9th. We met this wonderful family during our stay at Duke. Please keep them in your prayers. We love you all!!
God Bless you all!!
God Bless Caleb!!
So Caleb went to cleft-craniofacial clinic last week for a checkup. Unfortunately, do to us being stuck in traffic for a very long time we missed Dr. Losee, but another surgeon saw him and said the healing process looks good. Just keep up the care we are doing. We also talked about speech therapy and audiology therapy with our friend Matt at cleft-craniofacial and Caleb will probably need some therapy but we will have to wait until we get more immune function before Brian and I feel comfortable brining therapists into the home.
Which brings me on to the next topic. We did have blood drawn for immune studies. So pray hard that his T-cells (Immune System) is continuing to grow. As soon as we know anything we will post.
As promised pics.
On a final note, please keep our little friend Jacob Rice (Buddy) and his parents, Nick and Jessica in your prayers. As Jessica's mom said: 'little Buddy hatched his wings and flew to heaven to be with God' on May 9th. We met this wonderful family during our stay at Duke. Please keep them in your prayers. We love you all!!
God Bless you all!!
God Bless Caleb!!
Monday, May 05, 2008
Friday, May 02, 2008
Cleft Surgery is Done
Hello all...
The cleft surgery was last week and so far so good. It was about a seven hour surgery. Dr. Losee was not happy with the nose but was happy with the lip. He is a bit of a perfectionist...we love him and his group. We knew that this would not be the optimal repair as Caleb couldn't wear his mouthpiece after he coded at Duke and was on the ventilator for so long. He looks cute and very different!! We were actually only in the hospital for three days which is very odd for us. Usually we are there for the long stays. Hopefully those long stays will become a thing of the past. So he is still pretty swollen so as soon as the swelling goes down along with the black eyes I will post some pics.
So we still only have 1 nurse for five days a week, she is awesome. Not to happy with the nursing company still as we are qualified for 16 hours of nursing care a day for 7 days a week and they have had 3 months now to staff this case. We have had two nurses not even show up for their shift, one nurse who did not tell the truth about her qualifications, and another nurse who made a med error. So needless to say I would not recommend this nursing company. I would totally drop them and switch to another company but I don't want Caleb to lose the nurse he has now.
There are many of you who continually send wipes, diapers, etc. to our home. I wanted to give a little tidbit of information as I know many moms who read this are big into which companies help those who have children with special needs. I had posted that a certain company was going to donate hand sanitizer to Caleb. . .well they pulled there donation off the table. However, I did find another company that is willing to send something. If you ever need hand sanitizer and can buy Avant please do so. They were very willing to help out. Yes it may be a one time shipment but they still sent something, which is more than I can say for other companies. It is very disappointing when you call many well-known companies who would probably not be financially burdened by a donation that are not willing to donate to such a case. It seems to me, from our experience (i.e. Windcore, Panhandle Restoration and Cleaning, Jamison Carpeting, Cavi-Wipes, and you all) that the littler companies and individuals, who will bear a financial burden, are more willing to donate. Excuse my rant, but it just seems like something is wrong with that picture.
So it was a year ago we were arriving in Durham, NC to get Caleb a thymus transplant. It was not too long after we got there, May 10th 2007, that Caleb got sick and coded and was placed in the PICU on ventilator. I remember mothers day last year. . .my first mothers day and I was praying that Caleb would make it and we would have many more mothers days together. I remember all the other moms in the PICU waiting room that were spending their first mothers day the same way I was. I think of you all and your little ones often and you continue to be in my prayers. May this mothers day be a better one for us all!
In case I cannot get another opportunity to get back on in awhile. . . I wish everyone a Happy Mothers Day.
God Bless you all!!
God Bless Caleb!!
The cleft surgery was last week and so far so good. It was about a seven hour surgery. Dr. Losee was not happy with the nose but was happy with the lip. He is a bit of a perfectionist...we love him and his group. We knew that this would not be the optimal repair as Caleb couldn't wear his mouthpiece after he coded at Duke and was on the ventilator for so long. He looks cute and very different!! We were actually only in the hospital for three days which is very odd for us. Usually we are there for the long stays. Hopefully those long stays will become a thing of the past. So he is still pretty swollen so as soon as the swelling goes down along with the black eyes I will post some pics.
So we still only have 1 nurse for five days a week, she is awesome. Not to happy with the nursing company still as we are qualified for 16 hours of nursing care a day for 7 days a week and they have had 3 months now to staff this case. We have had two nurses not even show up for their shift, one nurse who did not tell the truth about her qualifications, and another nurse who made a med error. So needless to say I would not recommend this nursing company. I would totally drop them and switch to another company but I don't want Caleb to lose the nurse he has now.
There are many of you who continually send wipes, diapers, etc. to our home. I wanted to give a little tidbit of information as I know many moms who read this are big into which companies help those who have children with special needs. I had posted that a certain company was going to donate hand sanitizer to Caleb. . .well they pulled there donation off the table. However, I did find another company that is willing to send something. If you ever need hand sanitizer and can buy Avant please do so. They were very willing to help out. Yes it may be a one time shipment but they still sent something, which is more than I can say for other companies. It is very disappointing when you call many well-known companies who would probably not be financially burdened by a donation that are not willing to donate to such a case. It seems to me, from our experience (i.e. Windcore, Panhandle Restoration and Cleaning, Jamison Carpeting, Cavi-Wipes, and you all) that the littler companies and individuals, who will bear a financial burden, are more willing to donate. Excuse my rant, but it just seems like something is wrong with that picture.
So it was a year ago we were arriving in Durham, NC to get Caleb a thymus transplant. It was not too long after we got there, May 10th 2007, that Caleb got sick and coded and was placed in the PICU on ventilator. I remember mothers day last year. . .my first mothers day and I was praying that Caleb would make it and we would have many more mothers days together. I remember all the other moms in the PICU waiting room that were spending their first mothers day the same way I was. I think of you all and your little ones often and you continue to be in my prayers. May this mothers day be a better one for us all!
In case I cannot get another opportunity to get back on in awhile. . . I wish everyone a Happy Mothers Day.
God Bless you all!!
God Bless Caleb!!
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