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.
Wednesday, May 21, 2008
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!!
Monday, April 14, 2008
Immune Testing Bloodwork
Hello all.....READY FOR THE NEWS.....
CALEB HAS 6% T CELLS!!!
We are absolutely ecstatic here in the Hlebiczki household!!! wooohooo yeehawww
The percentage definitely has to increase but we finally have something!!! WOW!
I am crying typing this...I am still very nervous as I am every day as it is very scary to try to keep him from getting sick...but to know that there is something there is just amazing. I was so fortunate to talk to Dr. Markert today and she said she was smiling when the bloodwork came back and she actually saw T cells in his blood. HOW AWESOME!!! I could hear her excitement over the phone and new the news must have been good. I cannot thank that woman and her group enough for doing this transplant for Caleb. She and her group are truly amazing people. Thank you all and God Bless you!!
You all are amazing too....we continually get wipes, diaper genie refills, diapers,etc. on our porch daily. WE have been blessed to have you all in our lives. I cannot wait until the day when myself, Brian, and Caleb can personally thank you all face-to-face. God Bless you all. You are our angels. We love you and thank you.
God Bless you all!!
God Bless Caleb and his T cells!!
CALEB HAS 6% T CELLS!!!
We are absolutely ecstatic here in the Hlebiczki household!!! wooohooo yeehawww
The percentage definitely has to increase but we finally have something!!! WOW!
I am crying typing this...I am still very nervous as I am every day as it is very scary to try to keep him from getting sick...but to know that there is something there is just amazing. I was so fortunate to talk to Dr. Markert today and she said she was smiling when the bloodwork came back and she actually saw T cells in his blood. HOW AWESOME!!! I could hear her excitement over the phone and new the news must have been good. I cannot thank that woman and her group enough for doing this transplant for Caleb. She and her group are truly amazing people. Thank you all and God Bless you!!
You all are amazing too....we continually get wipes, diaper genie refills, diapers,etc. on our porch daily. WE have been blessed to have you all in our lives. I cannot wait until the day when myself, Brian, and Caleb can personally thank you all face-to-face. God Bless you all. You are our angels. We love you and thank you.
God Bless you all!!
God Bless Caleb and his T cells!!
Saturday, February 16, 2008
Liver seems to be producing Protein
So the liver seems to be producing protein...so where is he losing the protein is the question.
Well . . . I did not get to post about something they found before we left Duke. About two weeks before we left Duke they found a questionable mass in Caleb's chest. They tested for different types of Cancer and do not believe it is a cancerous type of mass. They are wondering if it is a lymph fluid build up. Possibly due to a lymph vessel getting nicked during one of his surgeries and leaking out into his body. So. . . when we left Duke they suggested we keep an eye on this mass to see what happens. Well now that he is losing protein, Dr. Markert is wondering if he is dumping the protein into his mass. Dr. Markert suggested that they do another x-ray to see what his mass looks like. I haven't heard back from any of the docs at Pittsburgh yet so. . . we will see. His Albumin gets checked again on Monday so we will so how that level is. I hope and pray that it stabilizes and starts going back up.
God Bless you all!!
God Bless Caleb!!
P.S. I will be adding pictures to this post hopefully later on today.
Well . . . I did not get to post about something they found before we left Duke. About two weeks before we left Duke they found a questionable mass in Caleb's chest. They tested for different types of Cancer and do not believe it is a cancerous type of mass. They are wondering if it is a lymph fluid build up. Possibly due to a lymph vessel getting nicked during one of his surgeries and leaking out into his body. So. . . when we left Duke they suggested we keep an eye on this mass to see what happens. Well now that he is losing protein, Dr. Markert is wondering if he is dumping the protein into his mass. Dr. Markert suggested that they do another x-ray to see what his mass looks like. I haven't heard back from any of the docs at Pittsburgh yet so. . . we will see. His Albumin gets checked again on Monday so we will so how that level is. I hope and pray that it stabilizes and starts going back up.
God Bless you all!!
God Bless Caleb!!
P.S. I will be adding pictures to this post hopefully later on today.
Thursday, February 14, 2008
Albumin level is low
So his Albumin level, protein level, is low. This level continues to drop and we are not sure where he is losing his protein. So far it doesn't seem to be that he is losing it in his urine or stool so the last thing to check is to see if his liver is making enough protein. I hope and pray that it is and that maybe we just have to re-run the urine and stool tests and find something there. We should get the results regarding the liver sometime this afternoon. A big concern with this level dropping is that he could third-space (send the fluid that should be going to his vessels out to his tissues, lungs, etc.). So we are keeping a close eye on him making sure he doesn't start to swell. I have been talking to Dr. Markert (the Dr. that did his tranplant-love that woman) to see what she thinks. We are communicating via email regarding his labs so maybe she will be able to provide some insight also.
God Bless you all!!
God Bless Caleb!!
God Bless you all!!
God Bless Caleb!!
Wednesday, February 13, 2008
New part for the Camera on its way
Hey all just a quick update. I found out what is wrong with the camera and a new part is in the mail. YEAH it is so exciting...I will be inundating you all with pictures very soon!! You will be shocked.
Friday, February 08, 2008
No UTI but some abnormal labs
So we are still trying to get settled in here at home. We finally had Christmas this past weekend. It was so nice. Caleb got more toys-imagine that. His grandparents and all his aunts and uncles love to spoil him. Thanks everyone.
I wish I could send thank you cards out to all of you for your generous gifts, cards, emails, etc. I am just so very busy and that is no excuse. Thank you also to all of our friends at Xerox (where Aunt Jen works). They sent Caleb so many wonderful gifts: clothes, diapers, stuff for his crib, etc. That we really needed! Thank you all. It amazes me how many wonderful people we have been blessed by that have come into our lives in the past 18 months. Thank you all.
Caleb did not have a UTI, but is having some abnormal labs. Some of his levels are not within the norm and hopefully we can get some of them stabilized with his new TPN. We will have to wait and see. We have clinic appointments next week so maybe we will learn more then. They are also planning on doing his next set of lab work for Duke while we are there so PRAY HARD FOR TCELLS.
On to nursing care. I think we were spoiled by the wonderful nurses at Duke and Childrens. We do have 1 nurse, who comes 8 hours a day monday through friday, and she is very good. However, I hang his IV medicines at night, do his dressing changes, change his cap on his IV etc. It has been very hectic. The company who does his IV meds is pretty much worthless, they keep messing up his drugs and if it wasn't for Brian and I double checking what they send we could have had some big issues. We do qualify for 16 hours a day of nursing care, but at this time we are only getting 8 hours a day Monday through Friday. So needless to say, I have not been really impressed with that so far either. But Brian and I have gotten in to a routine and have been working hard to get a routine down together. It is a shame what we were lead to believe didn't happen. But what can you do-
Well Caleb is only down for a nap for a short time and I have to get his IV meds out of the frig, get some laundry done, and do some chores around the house.
Special prayers:
Friends of the family lost their baby girl Victoria this past weekend. Please keep the parents, the brothers, and the extended family in your prayers.
Another friend of the family's son was in a car accident a couple months ago and was paralyzed. He is slowly regaining some movement in his limbs. Please pray for his family that he will continue to make progress in his rehabilitation.
We love you all and thank you for continuing to check on our little man.
God Bless you all!!
God Bless Caleb!!
I wish I could send thank you cards out to all of you for your generous gifts, cards, emails, etc. I am just so very busy and that is no excuse. Thank you also to all of our friends at Xerox (where Aunt Jen works). They sent Caleb so many wonderful gifts: clothes, diapers, stuff for his crib, etc. That we really needed! Thank you all. It amazes me how many wonderful people we have been blessed by that have come into our lives in the past 18 months. Thank you all.
Caleb did not have a UTI, but is having some abnormal labs. Some of his levels are not within the norm and hopefully we can get some of them stabilized with his new TPN. We will have to wait and see. We have clinic appointments next week so maybe we will learn more then. They are also planning on doing his next set of lab work for Duke while we are there so PRAY HARD FOR TCELLS.
On to nursing care. I think we were spoiled by the wonderful nurses at Duke and Childrens. We do have 1 nurse, who comes 8 hours a day monday through friday, and she is very good. However, I hang his IV medicines at night, do his dressing changes, change his cap on his IV etc. It has been very hectic. The company who does his IV meds is pretty much worthless, they keep messing up his drugs and if it wasn't for Brian and I double checking what they send we could have had some big issues. We do qualify for 16 hours a day of nursing care, but at this time we are only getting 8 hours a day Monday through Friday. So needless to say, I have not been really impressed with that so far either. But Brian and I have gotten in to a routine and have been working hard to get a routine down together. It is a shame what we were lead to believe didn't happen. But what can you do-
Well Caleb is only down for a nap for a short time and I have to get his IV meds out of the frig, get some laundry done, and do some chores around the house.
Special prayers:
Friends of the family lost their baby girl Victoria this past weekend. Please keep the parents, the brothers, and the extended family in your prayers.
Another friend of the family's son was in a car accident a couple months ago and was paralyzed. He is slowly regaining some movement in his limbs. Please pray for his family that he will continue to make progress in his rehabilitation.
We love you all and thank you for continuing to check on our little man.
God Bless you all!!
God Bless Caleb!!
Tuesday, January 29, 2008
A Much Needed Update
Hello all....so sorry for the delay. . . we have been very busy to say the least.
Well we arrived back in Pittsburgh on November 27th. Caleb did have his palate repaired and the recovery was difficult. While he was recovering from that surgery the poor guy tore his Nissan wrap (the tightening of the tummy to help with his reflux). So needless to say we had to have the wrap redone. Then we finally went home after New Years-thanks to all who send cookies, presents, etc. to us while we were in the hospital for the holidays, once again you all are awesome.
We were home for about two days, 40 hours, and Caleb got really sick and was life-flighted to Children's he was hypoglycemic (low sugar), hypovolemic (low fluid volume), and septic (had an infection. He was fluid resuscitated twice and almost went into cardiac arrest he spent two weeks in the PICU and step down ICU. He fought back and recovered well and was able to come back home. He is now back on TPN (IV nutrition) and low volume feeds (just enough to keep his gut active). I have learned how to take care of the IV line-very nervewracking. We have visited the ER three times since we have been home in the last week and a half. Brian and I woke up this morning and we think he now has a UTI so I just put a urine specimen bag on him and we will send that to the hospital to see what that shows--poor guy.
So needless to say I am sure you can see why I haven't updated in awhile. I miss you all so much and cannot thank you enough for all the prayers.
Now that I hope we are somewhat settled (knock on wood) I will try to update more regularly.
God Bless you all!!
God Bless Caleb!!
Well we arrived back in Pittsburgh on November 27th. Caleb did have his palate repaired and the recovery was difficult. While he was recovering from that surgery the poor guy tore his Nissan wrap (the tightening of the tummy to help with his reflux). So needless to say we had to have the wrap redone. Then we finally went home after New Years-thanks to all who send cookies, presents, etc. to us while we were in the hospital for the holidays, once again you all are awesome.
We were home for about two days, 40 hours, and Caleb got really sick and was life-flighted to Children's he was hypoglycemic (low sugar), hypovolemic (low fluid volume), and septic (had an infection. He was fluid resuscitated twice and almost went into cardiac arrest he spent two weeks in the PICU and step down ICU. He fought back and recovered well and was able to come back home. He is now back on TPN (IV nutrition) and low volume feeds (just enough to keep his gut active). I have learned how to take care of the IV line-very nervewracking. We have visited the ER three times since we have been home in the last week and a half. Brian and I woke up this morning and we think he now has a UTI so I just put a urine specimen bag on him and we will send that to the hospital to see what that shows--poor guy.
So needless to say I am sure you can see why I haven't updated in awhile. I miss you all so much and cannot thank you enough for all the prayers.
Now that I hope we are somewhat settled (knock on wood) I will try to update more regularly.
God Bless you all!!
God Bless Caleb!!
Subscribe to:
Posts (Atom)