Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"


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!!

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!!

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.

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!!

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!!

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!!

Monday, December 10, 2007

Hi everyone, this is Jen Straub, Sarah's friend. Sarah has asked me to post a quick blog to bring everyone up to speed because she is unable to get a connection at the hospital (they are behind double doors) and she is not able to leave the room.

I am honored to be able to share some wonderful news with everyone!! They just got the results of the Biopsy Caleb had at Duke in NC and he is producing T-Cells!!!!! They have not yet left his Thymus, but in time they should get trained and go out into his body to fight infection. Dr. Markert had told them that it would not be uncommon to not be able to see any T-Cells at this early stage, but not this special boy!! He is ahead of the pack!! This is fabulous news and means, so far, the fight for the transplant was worth every ounce of effort.

Caleb also had his cleft palette repaired last Wednesday. He is recovering well, but they have to keep everything out of his mouth for 3 weeks, and with a teething toddler, well you know. His lip adhesion surgery is scheduled for January 3rd. They will basically fuse the two parts of his lip together to help create more tissue for future surgeries.

They are also working to get Caleb off of the TPN drug (nutrition drug) before he heads home. Some of his liver levels were still off so they are monitoring that. At this point, if they are able to regulate those levels, the Drs are hopeful that Sarah and Caleb will be able to make their journey home on Friday!!! That is right. There is a strong likelihood that they will be in the comfort of their own home Friday!! Now we must continue our prayers because you can't count on it until it happens, but it would surely be wonderful for them all!!!

Once they are home they will still have to stay in isolation and Sarah and Brian will not be able to have any direct contact with anyone. They will have to stay in very isolated environments and will have to be protective of anything entering the home. This includes sterilizing everything, clothes included, before they enter the door. But it will be good to have them together and in the comfort of their own home instead of stuck in one room in the hospital without Brian being able to be with them everyday!!

The last comment Sarah wanted me to share is a request for prayers for the family of Samantha Welch. She is an amazing 17-year old girl who battled AML and just recently (December 1st I believe) lost her battle. She is now pain-free and in God's grace I am sure, but please pray for her parents, Eugene and Faith, two special people who touched Sarah and her mom's (Linda) hearts as they grieve and remember the joy their daughter brought to those who met her. God Bless you all!!

God Bless all of you!!!!!

For anyone looking for ways to contact Sarah directly, feel free to send an email to me and I will be happy to help as Sarah gets transitioned and doesn't have a strong connection to the internet. My email is jstrauby@comcast.net.

God Bless all of you and your families during this magical season. I know Caleb has certainly blessed us and helped to remind me and my family of what the true meaning of this season is. May you and yours be blessed as well.

God Bless Caleb and God Bless his parents for their relentless fight for their boy. I have never known more loving and determined people and I am even more blessed to be able to call them friends. I thank them for allowing me to share in their story and I thank all of you for continuing to pray for Caleb and to follow his journey. You have all helped so much by telling Caleb's story and helping to find companies generous enough to donate things to this special family. The latest was the donation to cover the costs of Caleb's hearing aids until he turns 18!! This is from a company that wants to remain anonymous, but was through the WTOV9 Season of Miracles program. Thank you WTOV9!!!! There are so many different ways to help this special family and I thank all of you on behalf of Sarah and Brian for all that you have done and all the kindness and generosity you have shown them. I know that when they can they will spend months making up with all the hugs they wish they could give out now!!

God Bless!! Merry Christmas!!! Happy Holidays!!!

Sunday, November 18, 2007

Biopsy is Done

Well all again sorry for the delay...we are still waiting on our fixed computer.

Caleb had his biopsy this past Friday. We won't know anything for at least a week. We are praying hard that the Thymus has grafted and they see some T-cell function. They have also mentioned that we MAY be heading back to Pittsburgh Children's around the 26th. However, this is only if Caleb stays healthy. So we are praying hard that he continues to stay healthy and infections stay away. We are hoping once we get back to Pittsburgh we can get Caleb home shortly after that to get him out of the hospital and decrease the chances of him being exposed to something. He has learned to wave and blow kisses-I have to say it is too cute!! He amazes us more and more and what a flirt.

My brother Ben worked miracles and got a company, Windcor, to donate windows for our home. Thank you so much to Windcor and Ben. Our friends and family worked tireously all day yesterday and got them all in for us. Thanks to Ben, Dad, Chad, Gary, Shani, Justin, Jimmy, Russ, Brian and more on getting those in for us. We have also found out that Pandhandle Restoration and Cleaning is going to clean our house for us thoroughly with the full gear for us at no charge. In addition, Sean Jamison, is going to put new flooring in Caleb's room at no charge. Thank you to all of you for such unbelievable generosity to our family. Again, we will not be able to thank you all enough.

Well all, I will let you know what is going on as soon as we know.

A couple prayers for a couple people who I know are going through some rough times right now: Josephine Wilson-who fell last week and broke her ankle and finger. I love you gram; The Welch family whose daughter is fighting AML (typer of cancer); Keep fighting Sam. Christi's family- who lost their house in the San Diego fires. I love you all and are praying for you all.

God Bless everyone!!

God Bless Caleb!!