Well all....again I first want to say thank you so much for the thoughtful comments, calls, emails, and prayers.
Update:
Caleb is still in the ICU on the oscillator. He was making baby steps in the right direction, however, he spiked a fever on Sunday during the day and by late night and early Morning Monday the setting were turned back up to the maximum on the oscillator. They have been drawing blood gases to check his ph and carbon dioxide levels and have been able to turn down the settings on his oscillator. He is again making baby steps in the right direction 'knock on wood' (we have been doing a lot of that). We hope that his blood gases will continue to be good. Many of the docs here have been calling him the fighter. If all goes well through tonight they are hoping to switch him over to the conventional ventilator and hopefully get him off the oscillator. However, as we have joked with the doctors we will do this on Caleb's watch!!! He will let us know when he is ready to be switched over to the conventional ventilator.
This has been a very stressful and scary couple of days and we really appreciate everyones' thoughts and comments it is a nice way for us to keep in touch with everyone and know that you are here with us. I want to apologize for the delay in the update but as I am sure you understand we have been very busy and preoccupied. One of our wonderful CHARGEr friends and her family made a video for Caleb and our family and I wanted to post it today. Thanks Crystal and Eva for such a wonderful video. IT IS BEAUTIFUL!!!
Please continue to keep Caleb in your prayers and that he continues to make baby steps in the right direction. God Bless Caleb!!!
Wednesday, May 23, 2007
Wednesday, May 16, 2007
Still in the PICU
First I want to say thank you for all of the thoughtful emails, phone calls, and prayers.
Caleb is still in the PICU in critical condition. He still has about one or two 'unstable' times a day. We are hoping that these are lessening in degree though. He is starting to get rid of his extra fluid by urinating, which is great as he is VERY swollen. He pretty much was reaching the point that he couldn't hold any extra fluid and they were worried this may cause problems for his internal organs. He still has times when his Acid levels and Carbon Dioxide levels aren't within normal range. We are hoping that once he gets rid of some of this fluid that these gases will stay within the normal range. It is a very nervewracking waiting game.
We continue to pray that Caleb continues to make baby steps in the right direction. We pray he can continue to get rid of this fluid and we pray that his gases can start STAYING within normal range.
God Bless Caleb!
Caleb is still in the PICU in critical condition. He still has about one or two 'unstable' times a day. We are hoping that these are lessening in degree though. He is starting to get rid of his extra fluid by urinating, which is great as he is VERY swollen. He pretty much was reaching the point that he couldn't hold any extra fluid and they were worried this may cause problems for his internal organs. He still has times when his Acid levels and Carbon Dioxide levels aren't within normal range. We are hoping that once he gets rid of some of this fluid that these gases will stay within the normal range. It is a very nervewracking waiting game.
We continue to pray that Caleb continues to make baby steps in the right direction. We pray he can continue to get rid of this fluid and we pray that his gases can start STAYING within normal range.
God Bless Caleb!
Monday, May 14, 2007
Prayers Needed
Well....sorry for the delay in posts, but Caleb has been not feeling well since his arrival at Duke. He developed a severe infection on Thursday and was intibated (put on a ventilator). He developed a high temperature of 103 degrees and got acidodic (high levels of acid in his blood) and was not getting rid of the bad gases (carbon dioxide) out of his lungs. He was not doing well at all on Friday morning and they had difficulty stabilizing him. He was finally stabilized on Friday afternoon and has had about one or two unstable times a day. He is still in critical condition. They are trying to find the source of the infection. They keep adjusting his ventilator (oscillator-shakes his body and keeps his lungs open to keep fluid out of his lungs) to find the right setting for him so the fluid does not go into his lungs. They are many things they are watching at this time and honestly there is not enough time to type. We would just appreciate everyones' prayers that Caleb can continue to fight this infection, get rid of the extra fluid, and stay stable. I will try to update as soon as I can. Please pray for Caleb!!!!
Wednesday, May 02, 2007
Wasting no time
Hello all...sorry for the delay still get adjusted to our new surroundings and we have had some days jammed packed with tests.
So they have already done many tests: cheek swab (to check Caleb's cells to compare them before and after transplant), blood work on Caleb and me, chest x-ray, swallow study to check for aspiration (he does aspirate (get fluid in his lungs) on non-thickened feeds), GI scope to check to see what is causing the diarrhea, CT of his head, and echocardiogram. The CT scan was done to check his shunt as it was tapped and reset before we left Children's on Monday. They also had to put a stitch in his shunt after the tap before he flew as he was leaking some spinal fluid from the tap. Dr. Markert believes she knows what is causing the diarrhea but wants to have concrete proof before she starts Caleb on the meds she thinks he needs. These meds can also effect the Thymus so she wants to get the gut under control before the transplant.
Also, as promised I have some pics that I have put in a video. I was going to take some pictures on the plane but I didn't think the pilots would appreciate that in flight, sorry to all of those who asked me to take pics but I did get pics of Caleb boarding and deboarding. He was such a trooper for the ambulance rides and the flight. Like adults the take off and landing were rough for him as I think it may have bothered his ears too. But he did great and he is adjusting to his new environment quite well. The rooms are much smaller. . . so all of those back at Children's who know how much stuff we had ....we are running out to the car often. :)
Well as promised here are some pics. And now that we are more acquainted I will post more often.
OHHHHHHHHHHHHH the address:
Duke University Hospital
Erwin Road
Durham, NC 27710
c/0 Caleb Hlebiczki
5th floor Rm 5125
So they have already done many tests: cheek swab (to check Caleb's cells to compare them before and after transplant), blood work on Caleb and me, chest x-ray, swallow study to check for aspiration (he does aspirate (get fluid in his lungs) on non-thickened feeds), GI scope to check to see what is causing the diarrhea, CT of his head, and echocardiogram. The CT scan was done to check his shunt as it was tapped and reset before we left Children's on Monday. They also had to put a stitch in his shunt after the tap before he flew as he was leaking some spinal fluid from the tap. Dr. Markert believes she knows what is causing the diarrhea but wants to have concrete proof before she starts Caleb on the meds she thinks he needs. These meds can also effect the Thymus so she wants to get the gut under control before the transplant.
Also, as promised I have some pics that I have put in a video. I was going to take some pictures on the plane but I didn't think the pilots would appreciate that in flight, sorry to all of those who asked me to take pics but I did get pics of Caleb boarding and deboarding. He was such a trooper for the ambulance rides and the flight. Like adults the take off and landing were rough for him as I think it may have bothered his ears too. But he did great and he is adjusting to his new environment quite well. The rooms are much smaller. . . so all of those back at Children's who know how much stuff we had ....we are running out to the car often. :)
Well as promised here are some pics. And now that we are more acquainted I will post more often.
OHHHHHHHHHHHHH the address:
Duke University Hospital
Erwin Road
Durham, NC 27710
c/0 Caleb Hlebiczki
5th floor Rm 5125
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