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!!!

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!!

Sorry for the Delay

Hi all, Sorry for the delay in updates. Our computer broke so it is hard to get to the Ronald McDonald Room to use the computer.

Caleb is playing tons. We have a couple issues. His LFTs, liver function tests, are up so they are doing some tests to see what is causing it. Hopefully, if anything it is his TPN. We are working on his feeds to hopefully get him up to a high level. Slowly but surely we are working towards it. His biopsy on his Thymus can't even happen until EARLIEST November 12th. So hopefully we continue to keep Caleb healthy. As soon as we get our computer back I will post some pics.

I will update more soon.

God Bless everyone.

God Bless Caleb!!

Updates

Well all here are a couple updates. . .

Feeding
Caleb is still having issues regarding gagging after getting a feed because he is trying to figure out how to burp, but can't due to the Nissan wrap. The docs said it can take up to 4 months for his stomach to get used to the wrap. They are doing a couple 'rule-out' tests (shunt series x-rays, GI swallow, Gastric Emptying Study) to make sure nothing else is causing the gagging. Once I vent the Mic-key he gets rid of some gas and feels much better. It is just tough to see him so uncomfortable. AND yes....Caleb got his Mic-key button (replaces the G-tube). The Mic-key is so much better as it is a lot less cumbersome than the G-tube and doesn't tug on his belly as much. It is also a lot easier to dress the little one.

Teeth
Caleb has two teeth!! His bottom two front teeth came in and they are so cute. I think he may be trying to cut more teeth as his body temp is a little warmer (hopefully it is nothing else) than normal.

UTI
Caleb has a UTI so he is on some tough IV antibiotics to hopefully get rid of the infection.

Hearing Aid
Caleb has been wearing his hearing aid more, which he doesn't like it when I put it in but is happy after it is in. We had to get a new mold done here about a month ago, because he has grown. However, he wasn't able to wear it a lot lately due to a lot of stuff going on here. The hearing aid seems to be whistling a lot so I am going to ask if Audiology can come and look at it and make sure it fits okay...doesn't seem like it sits down far enough into his ear canal.

Development
I ordered a play pen for Caleb online. We are hoping this will help him with crawling and more developmental milestones as it is hard and dangerous to do so in a metal crib. In addition, the floors here are not the cleanest so I am not willing to put him on the floor. Hopefully, he will like the play pen!

Well there are more updates but my man is waking up from a nap and wants to play. I will write more later.

God Bless you all!!

God Bless Caleb!!

Pictures before and After Transplant

Well the poor guy is trying to cut a whole bunch of teeth at once right now...Man oh man. But despite the teeth, he entertains. Everyone who has come in today says how good he looks. Our man has some big bruises on his legs from the Transplant but he seems to be in good spirits. They are trying to feed him again through his G-tube. We will have to wait and see how that works, as he was retching a lot when we tried feeds before his transplant. Retching (gagging) is the last thing you want right now as it would tear his Nissan wrap out and that would be bad as he could reflux again if the wrap comes out. So we have started at a VERY small rate, 2ml/hour (approximately 13cc less than a half ounce)-small huh?!?

Brian, Dad, Jean, and Ron left today to go back to WV. We already miss them so much. They were here for a week and it was very nice to have them here. It is so hard to be away from Brian for so long. We are trying to find a way to get him back down here in approximately two weeks. I love you babe and miss you very much already.

We know we will be here for at least a couple months, but there is the concern of what needs to be done to the house before we could bring Caleb home. Man the list of things that need to be done is overwhelming to say the least. The biggest priority is getting it 'clean' in every way to have it be a safe environment for Caleb. We are looking into ripping up his carpet in his room to have a more allergen free type of flooring, new windows in the house (as ours are very old and most do not have storm windows anymore), and a very thorough clean (especially-the basement and duct work) as we were flooded a couple years ago and I want to make sure no remnants are left. The list is overwhelming and with me not working and the market in regards to Brian's job (loan officer) isn't at its best right now....I will be trying to talk to several companies to see if they can help us out with this items and more as I am sure the list will grow. If anyone has any suggestions please let me know. I had considered writing Extreme Home Makeover in the past, but not sure if there is time and if honestly we would get picked. I guess it is something to think about and how would you know if you don't try. But seriously, if anyone has any suggestions on who I could contact please let me know. I will be writing Lysol later today, as we use about 120 of their wipes in two days...CRAZY huh. Who knows if they would donate some, but it is worth a shot right?!?!?

Well again, I wanted to give you all a short update and let you know what is going on here. I have included some pictures below too and I should have some videos later in the week!! Enjoy.

God Bless Caleb!!

Photo and video editing at www.OneTrueMedia.com

Yeahhhhhhhhhhhhhh Thymus

Thank God we have a Thymus and it is in Caleb's legs!! Wooo hooo.

He went to the PICU after surgery and was getting ready to go to the floor when he started having some pain management issues. They got that under control and he was able to come back to the floor the next morning. The bonus to it all was the nurses on Caleb's floor fought so hard to keep Caleb's room for us (it is one of three big rooms) so we wouldn't have to moved to a small room. They are a good group of girls here, just like the nurses in Pittsburgh.

He has been playing like crazy today and is resting well right now. He was a little fussy earlier today, but we attribute that to teething and the soreness in his little legs. Dr. Markert let us know that the Thymus was a really good match. Now we have to pray for T cell function. We should know how that is in about five months. So, we still have to watch him pretty closely and keep him healthy for at least the five months while we wait to see if the transplant worked.

I will write more later...but I wanted to give a short update as I know a lot of you are anxiously awaiting an update.

Also, a couple of prayers. Our little buddy PJ (one of Caleb's Duke PICU buddies) was re-admitted and is intibated again. He is not able to keep his oxygen levels up, so, his family could use some extra prayers. Please visit his website, the link is on the left side of this screen (PJAngelChild). Also, we would like to welcome home baby Zoe. Our friends John and Lee Roberts just got home from Vietnam with their baby girl Zoe. Pleas visit their website also and see the adorable pictures of little Zoe. The link to her website is at the left also.

I also want to thank all of you for your continual comments and prayers for our family. You all mean so much to us!! We are blessed to have each and every one of you in our lives. Thank you so much, from the bottom of our hearts. God Bless you all, you are truly amazing.

God Bless Caleb!!

Surgery is Started

Well, Caleb went into surgery earlier than planned. The first case cancelled so Caleb went in at 8:45 and they are planning on a two hour surgery. They have also planned for him to go to the PICU after the surgery to closely monitor him due to his extabation issues and pain. As soon as we hear any more I will update. Thank you all for your prayers. We love you all. We are so happy that this day has come. We pray that he recovers well and that this thymus works and gives him a full-functioning immune system.

Thank you all again. I will update as soon as I can.

God Bless Caleb!!

Transplant at 10:00 a.m.

Hey all!!! Caleb's transplant is scheduled for 10:00 a.m. tomorrow morning. Just wanted to let you all know when he was suppossed to go in. They will do some final tests tomorrow morning on the Thymus before the transplant!!! PRAY HARD!!!

Thanks to all!!

God Bless Caleb!!

Third Dose of ATG

First off, I have to appologize for the delay in updates. I have to admit I was a little more emotionally distraught after the cancellation of the transplant two weeks ago than I let on in my last post. BUT. . . Caleb has been in the ICU for the past couple days getting ATG (the medicine infusion they give before transplant). He is getting his last infusion tonight and we have a potential transplant date on WEDNESDAY!!! So PLEASE say TONS of prayers. I will post more with pics later, but we are very tired and just got back to the hotel and will have a couple long days in front of us.

Again, thank you all of you for your phone calls, cards, emails, prayers, etc. You all are a wonderful support system for our family. Again, I appologize for the delay in updates. But hopefully things will continue to 'stay the course'.

God bless you all.

God Bless Caleb!!

Still Waiting For a Thymus

Sorry all for the delay. We have been busy moving rooms, as wonderful Aunt Jen said in the comments section (she is so sweet to us). Caleb ended up having his G-tube put in as well as a Nissan wrap (wrapped his stomach to prevent severe reflux), repair of his broviac tube (his central IV tube that split the morning of the surgery), and to remove his gall bladder (as it was causing problems since he was initially in the PICU). He is still healing from that surgery and that was about two weeks ago. His G-tube is still leaking, YUCK!!! But, we are trying to keep it clean and infection free. He is now up to 18 mls an hour on feeds, I think the goal is 48 mls. They are only increasing it 2 mls a day, if all is okay, to not overwhelm his GI tract.

Well, on to the Thymus. Once again we were VERY close to a Thymus. We thought number 8 was it. Caleb was even in the PICU getting his first of three ATG infusions (the infusion they get pre-transplant to prevent their body from rejecting the Thymus). He was actually scheduled for transplant for this Friday. Brian was here also and was planning on staying through Sunday. However, one of the last tests was on the virge of passing and the docs decided that night that they weren't comfortable with the results. The transplant was cancelled on Sunday night. Brian had to fly back early to get back to work, so he can come back when they find a healthier Thymus. Needless to say, we were definitely upset, but didn't want to take that risk. We were close again, but we are praying for a healthy Thymus to come soon. We are back out on the floor waiting for a Thymus. We are screening Thymus 10 with a possible 11 and 12 later this week. Crazy huh?!?! Emotionally we are better, just nervous as the wait for a Thymus keeps get longer and longer.

Well on a wonderful side note, Caleb rolled over onto his tummy yesterday for the first time ever, despite having the G-tube. Of course, there has been some developmental delay due to being in a hospital for about 12 months, but Caleb continues to strive developmentally. THe PT and OT therapists are so happy with thes progress that he has made despite all his surgeries he has had here. He is such a sweetheart and an amazing little boy.

Again all, sorry for the delay it has been very busy with the moving back and forth to the PICU for different surgeries and then to have the last upset regarding the Thymus. They will find him one.

Please continue to keep Caleb in your prayers and pray they find him a Thymus!! We love and miss you all!!

God Bless Caleb!!

Levels are Better

So Caleb's levels are better. We are hoping they will stay that way. He got more blood today, so that will help his hemoglobin level. I just really pray that they can get a GREAT Thymus this week!!

So . . . I have to admit I have been a bit emotional lately. It is so hard to see your child go through all of this. It is also hard to be away from home and to be away from Brian. By no means do I want to go home until Caleb is healthy, but I am homesick. I miss my husband, dog, dad, brothers and their families, friends, and the 'sense and feeling' of being home. I know it will come soon. I pray for the day Caleb, Brian, and I will walk in the back door and I know in the back of my mind that Caleb's T-cells are starting to function. That he can sleep in his own room that he has barely spent any time in. That we can all wake up in the morning, have breakfast, and have a 'normal' day of hanging out in the house. Just the thought of all that makes me tear up.

I appreciate everyone's continual support and prayers for our family. Thank you all so much. God Bless you all.

God Bless Caleb!!

Happy Birthday Brian

Happy 32nd Birthday Brian. We love you soooooo much and miss you unbelievably. We hope you have a blast today. Caleb wanted me to tell you that he is glad you like the balloons and that he loves you very much!! I love you babe!!

As far as Caleb's labs, they improved a little bit in regards to his electrolytes. However, his DIC panel (clotting factors) have dropped and they are not sure why. They gave him some FFP (fresh frozen plasma) to help him with the clotting factors and are starting him back on Vitamin K to help him with this also. Again, they are puzzled as to why his labs look like they do.

God Bless Caleb!!

It's not Teething-Prayers Needed

So the docs just came in and Caleb's labs for today are really out of whack. Some of his electrolytes are really abnormal, which they are hoping they can fix with a new bag of TPN (IV nutrition). His hemoglobin (blood level) has also dropped. They believe that these abnormalities are either due to fluid overload (which he doesn't look like he has visually) or that he is starting to show early signs of infection. They also said in the back of their minds there also has to be concern for bleeding as the hemoglobin has dropped. They are going to change his TPN, adjust his diuretics, and do a urinalysis.

Honestly, I am so scared for him. This just isn't fair to him!! He has proven he is a fighter, I don't understand why he has to continually prove it. Every time the word infection comes out of their mouths I feel sick. The last two times he has gotten an infection we never really knew what he was fighting.

They are going to pull another set of labs tonight at 8:00 to see how his electrolytes are. I am just praying so hard that this is just a fluid/TPN issue and not an infection. Please pray for Caleb!!

God Bless Caleb!!

Still Cranky and Another Surgery in the Near Future

Okay all. . .so he is still cranky, not sure why....I HOPE AND PRAY that he is teething. It would be wonderful if that is all it is, but we just aren't sure.

He is still NPO (not eating) to give his gut a rest as his tummy was so upset yesterday and he was vomiting and stooling blood. As far as the blood is concerned, it is good news that his DIC panel (the clotting levels) that was so out of whack last week has begun to get closer to the normal level. Hopefully those levels will continue to trend towards normal. In addition, they are going to try to feed him through his ND tube again tomorrow and see how he does...hopefully no vomiting.

Dr. Markert stopped by today and she said that she agrees Caleb needs a G-tube. So she is going to talk to the insurance company to try to get that approved. In addition to the G-tube, they will do a Nissan wrap. The wrap wraps the top part of the stomach to prevent reflux. There would be no point in doing a G-tube without the Nissan wrap with the amount of reflux Caleb has. Again, there is the concern with intibation and extabation (removal of the tube) on top of the surgery itself so Caleb will spend the night in the PICU for close monitoring.

Dr. Markert also said she believes there are a couple of heart surgeries next week, where Thymuses will be removed so she is hopeful there will be a good one in the bunch. IF so, that would put us at a transplant date in about three weeks. Let's pray there's a good Thymus in the bunch.

We miss you all at home very very very much!!! AND on a side note....Caleb's main man is turning 32 on Saturday- so if you see him wish him a happy b-day and buy him a beer!!! We love you babe, sorry had to let everyone know!!!! HA - HA

Zero for Five

We are zero for five Thymuses and we now know that the one being removed this week is not a candidate either. So we keep waiting and continue praying that Caleb can stay healthy while we wait.

Dad and Brian were here this past weekend. It was so nice to have them here!! Caleb started talking more during their visit. He says momma, dadda, uh-oh, oh my, and a version of I love you. He also loves to stick his tongue out at his Pap Pap. He also is starting to wave!!! He is getting really good at mimicking noises and motions. Dad and Brian left on Tuesday, and it was hard, as it seemed like they just got here. They are both our incomes, but man if we could win the lottery so they could both quit. . .that would be the best!!!

Caleb is still fighting that infection. His clotting factors have been off which made him bleed (and we are wondering if they still are off) internally. They did a test to check to see if they could tell where the bleeding was coming from and they are not sure. They placed a new ND (nasal duodenum) tube yesterday and tried feeds. He has vomitted a lot today and they have all been positive for blood. The docs seem to think that the blood is due to the tube placement, however, I think that this is still related to whatever was making him bleed last week. Another concern, if he can't get his nutrition through the ND tube he has to get TPN (intravenous nutrition). However, the TPN made his liver function tests (LFTs) rise very high in the PICU and they are starting to do that now. Brian and I are wondering if a G-tube/Mickey Button (semi-permanent feeding tube in the belly), would be a better option for Caleb. The G-tube may be a better option as he wouldn't have to be exposed to radiation as much (they use radiation every time a ND tube is placed), may make feeding easier, easier to feed him after his cleft surgery, etc. I guess we will have to see if that could be an option.

With the vomiting today Caleb has started to get more cranky so I am getting nervous as to what is causing all this. He also was 99.1 (not a temp-but higher than his norm) this afternoon, so I am hoping he doesn't run any temps throughout the night.

Well all, as promised the second half of pictures from Caleb's first birthday are below...enjoy. I will have newer ones from the most recent visit as long as things are okay here.

God Bless Caleb!!

Make an on-line slide show at www.OneTrueMedia.com

Septic Again

Well Caleb has another infection which has made him septic. He woke up two nights ago vomiting all night long. They finally pulled his ND (nasal duodenum) tube and placed a NG (gastrointestinal) tube to suction what was in his gut. The vomiting at that time finally stopped!!! However, they did try to place an OG (oral gastrointestinal tube) while the ND tube was in and he wouldn't breathe and his profusion (blood flow) was horrible. Once the ND was pulled Caleb seemed a lot more comfortable and the profusion got better. They did call a 'rapid response' (when they page the PICU team) to have the PICU group come and see him. He is being closely monitored now. They did cultures of all of his lines, urine, you name it. Nothing has grown yet. Since nothing has grown, the concern now becomes if he has another fungal infection. We continue to pray that if this is a fungus it doesn't spread to his heart and cause any problems. They believe a part of the infection is that his bowels/intestines went to 'sleep' and have stopped moving. An x-ray showed that his intestines were very large and so we are hoping the bowels will start moving again soon so we can place a new ND tube and start feeding him again soon. He has been pretty cranky since he got sick. We are praying that he can clear this infection and get better very soon.

As far as the Thymus I mentioned in my last post, it didn't past the screening process. They then were screening another thymus which looked great and passed almost all the tests, until today when it failed one of the last two tests. So again we are waiting for another Thymus. Dr. Markert did mention that there are going to be two heart surgeries next week, so we are praying for consents to be signed and for a good Thymus.

I know I promised pics from Caleb's birthday, but he is pretty cranky and is only sleeping for 15 minutes at a time. . . so we are pretty busy. I promise I will post them soon.

God Bless Everyone.

God Bless Caleb!!

Another Surgery

Caleb had yet another surgery today! He had to get an inguinal hernia repaired as they were concerned that it was cutting off part of his bowel. They were also concerned about his shunt catheter as previous x-rays had showed that the catheter had slipped into the opening of the hernia and was draining the spinal fluid way too low. Good news, by the time they got him to surgery the catheter had moved back into his belly so they did not have to manipulate the catheter, which is great as any time you touch any part of the shunt an infection could arise. Another concern was extabation (if the ventilator would be removed) as Caleb does have CHARGE and a lot of CHARGEr kiddos have problems with their lungs especially with anesthesia. BUT Caleb did great the tube is out and he is now recovering in the room. Again, we have to pray that he stays infection free of course as he doesn't have an immune system. Which brings me to another topic....we have a potential Thymus donor at this time. All we know is that a heart surgery was occurring today (which means a Thymus will be discarded) and Dr. Markert and her team were going to talk to the parents to see if they would consider donating a Thymus. If they do that is great!!! Then, of course, the Thymus would have to go through the testing process along with a screening process of the donor's family. So we are hoping that the family will donate the Thymus and that it is a good clean Thymus too!!! Keep praying!

Again, I can't thank everyone enough for all of Caleb's birthday gifts. They are still coming. You all have made his birthday so unbelievably memorable. It was tough to be away from all of our family and friends for his first birthday. But the support system you all have provided us has TRULY helped us through this time. [Okay..now I am crying] Everybody always comments at how strong we are as a family, but honestly you all are a big part of our strength. You all have prayed with us, sent emails and cards, and have been there when we have asked for anything.

Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!
—Ecclesiastes 4:9-10

Thank you all for lifting us up and being there for us. We wish we could repay you all in some way for what you have done for our family. Thank you so much. God Bless you all.

God Bless Caleb!!

Happy 1st Birthday Caleb!!

Wow... what a 1st Birthday!!!

Thank you all for your generous cards and gifts. It was truly amazing and the gifts are still coming today!!! Gifts literally came from all across the U.S. I couldn't even keep up with taking pictures of Caleb with every gift he got. I seriously had to go buy big duffel bags to put all his gifts in. It was a very heartwarming and amazing day. Awesome!! I have made a video and will be making another one with the next post.

Pap Pap Bernie and Brian are both home safely...and it was very nice to have them here. It seemed like the visit was very short.

Well I am sure you all want to see the birthday boy so...ENJOY and THANK YOU ALL and GOD BLESS YOU!!

God Bless Caleb!!

Make an on-line slideshow at www.OneTrueMedia.com

He Ate Food Today

Caleb wasn't allowed to eat anything earlier today as he was having some awkward hives. They think they have found the culprit, one of his antibiotics he is on for his line infection, we aren't exactly sure yet. We will have to wait and see if any more develop since they switched his meds. We finally got to try some food this evening. He had a couple bites of bananas and liked it!!! He also had some thickened formula - which he didn't like, not to pleasing to the palate. He then threw up three times after the feed. We are not exactly sure why he is throwing up, but he has been having more phloem issues too. So the phloem along withm his cleft lip and palate may be causing the food to move up into the open palate and into the nose. Most kids have their cleft lip repaired by this time and the docs would start thinking about the palate surgery around this time, 12-18 months. This is somewhat concerning, as if the palate is not repaired around this time, when they start to talk, a speech impediment can develop. But, one step at a time. We have to get his immune system better first.

Caleb did have many stools lastnight which made him drop some very important levels, which they are trying to regulate now with different types of fluids. They have been changing the fluids all day and they just did another blood test to see if that is helping. Mainly his bi-carb, PH, and electrolytes are very abnormal. We are hoping that these fluids will help. I also noticed that they used apple juice during the swallow study yesterday so that may have contributed to the extra stools; in addition to his problems with the immunosuppression. I will talk to the docs about that tomorrow also.

They did put the halter monitor on Caleb yesterday and lastnight and he did not brady (drop his heart rate) while wearing the monitor. So we will have to see what they can decipher from the monitor and see if they want him to wear it again.

We are very excited!!! Tomorrow is Caleb's 1st birthday!!! So exciting. We have bought decorations and I went and ordered his cake today-Winnie the Pooh. I can't wait to decorate so I may do it tonight so it will be ready when he wakes up!!! Brian is flying in tomorrow too!!! And Pap Pap Bernie comes on Friday so Mom, Caleb, and I are very excited to see them both. God bless both Brian and my dad during their travel here.

Again, I will take many pics (trust me) of Caleb's birthday!!!

God Bless everyone.

God Bless Caleb!!

Make an on-line slideshow at www.OneTrueMedia.com

Echocardiogram Results

Well I am happy to say that the Echo did not show any signs of infection!!! PHEW!!!!!!! They said they didn't get the best pictures, but from what they saw, they said it didn't show any signs of infection. In addition, the calculation they can do to check the efficiency of the heart looks better also. His exit echo from the PICU was 37% and yesterday's echo was 50%. They said that most adults are at 60%, so he looks good!!!!

ALSO, Caleb went down for another swallow study today. As most of you know, Caleb has had eating issues before he got sick from what we think is an oral adversion due to how many meds he has been on. In addition, he was getting so upset when anything was put in his mouth he would aspirate (cough and move the fluid to his lungs). Since he was extabated in the PICU he has been really wanting to put things in his mouth. So he went down for the swallow study today...AND he only aspirated on very thin fluids so they are going to allow me to try to feed him a bottle at least twice a day and try feeding him baby food twice a day too. So exciting!!! Now. . . we also know with CHARGE Syndrome that some children have texture adversions with feeding too...so we will have to wait and see how he does over time.

ALSO, Dr. Markert came in today and was ecstatic with how Caleb looked and acted. Her words exactly 'He's back'. She said she was really scared with how sick he was how and if he would recover. She did say that a Thymus Transplant can happen a month after the heart surgery (we are two weeks post heart surgery today) granted they have a Thymus. She said she is going to look very hard for a Thymus!!!

So we are very excited. But again we don't let our highs get too high and our lows too low here.

I will let everyone know how the feeds go tomorrow!!!!

OH and Brian will be here in two days and Pap Pap Bernie will be here in three!!! YEAH!!

God Bless Everyone!

God Bless Caleb!!

Echocardiogram

No results from the Echo yet. Caleb was sooooo good during the Echo though so he didn't need to be sedated!!!! Way to go Bubber!

Cardiology stopped by today. They removed the stitches from where the chest tube was and are debating on whether or not to remove the stitches from the longer chest incision. They have decided to hook Caleb up to a Halter type monitor in the next day or so for a day or two to see if they can get one of these Brady episodes recorded. If so, hopefully this will let us know what is causing the Bradys. Very nervewracking. The Cardiologist did say though that he is not as concerned about the Bradys as long as Caleb isn't doing them when he is awake too. If he was doing it awake and asleep that would point to a more serious issue. They are hoping that if he is just doing this when sleeping it is just because, like most individuals, your heart rate drops when you are asleep. Another encouraging thing is they are saying that he is perfusing well (blood is circulating to his extremities). However, I will feel better once we get a more definitive answer on what is causing these episodes.

We didn't get to see Dr. Markert today, hopefully tomorrow.

God bless everyone.

God Bless Caleb!!

Our Friends from the Duke PICU

On a side note....I just wanted to make note of the new links on the left of the page for the webpages of some of our friends we met in the Duke PICU. I have a couple more pages to add once I get more info.

Another Brady (dropped heart rate)

Well during the night lastnight Caleb;s heart started beating really slow again. They said that the EKG strip looked okay. I am getting a little frustrated though as I don't think this is being taken as serious as it should. As I said yesterday, I am really hoping Cardiology stops by today to offer their advice on what is going on.

Again, I will keep everyone updated on what the Echo shows today.

God Bless Caleb!!

Sedated Echo

Well the peripheral blood culture and the culture from the other central line did not grow anything so far. So far so good (knock on wood).

They were able to identify the bug that grew in the cultures and the good news is they say that this type of bug responds to a broad spectrum of antibiotics. So they have switched Caleb's antibiotics to those that are less harsh on the system. In addition, they are going to do a sedated Echocardiogram tomorrow to check Caleb's heart and the ASD. They will check the ASD patch for vegetation to see if the bacteria has gotten to his heart. They are telling us that this type of bacteria is not as concerning as a fungal infection because of what type of bug it is. They say if they do find vegetation they will put Caleb on a longer course of antibiotics to treat the bacteria. I am just praying that there is no vegetation of course.

Dr. Markert should be back from vacation tomorrow, so we are hoping the Thymus Tissue screening process will start and HOPEFULLY they can find Caleb a Thymus and that it will work to spark an immune system for him.

Caleb's heart rate is still pretty low. I am hoping Cardiology will stop by tomorrow so I can get their input on what is going on.

Well all...I will let you know what happens with the Echo. Take care and God Bless.

God Bless Caleb!!

Crummy Line Infection - Prayers Needed

Okay all...I hope this new post find everyone well!! I hope everyone had a great fourth of July too!

I remember what was going on last year on the 4th. Brian and I went over to my brother Chad's to hang out with the family and to watch fireworks. I was due the next week. They had questioned Caleb's growth/development from the point at which I was four months pregnant, but that night something encouraging happened....my brother (who is a kid when it comes to fireworks) started the show early in his backyard and lit some fireworks for my niece and nephews and the neighborhood kids. The first firework went up and into the air and 'boom' and then it was awesome Caleb got the hiccups. We read so much when I was pregnant what to expect as far as movements in the course of pregnancy, etc. But we always read that hiccups were encouraging as that is a major suck/swallow reflex. He is a determined little boy. He has to go through so much. I have learned so much from my son, he has such strength. I continue to pray for his strength and fighting spirit. He honestly has taught me to be a better person.

As you can see from the post title, Caleb has a line infection in one of his two central lines that we know of this far. He was very grumpy two days ago and ran a low grade fever. They cultured the broviac line at that time and a bug grew in the culture. After two positive cultures from that line they decided to culture his other central line and do a peripheral stick to see if the infection is in his blood stream also. They started him on IV antibiotics as soon as he spiked a fever. We are still waiting to see what type of bug it is...they think it is in the family of one of the 'sticky' bugs. Which means it likes to stick to foreign objects within the body. The concern...not only is it a concern for immunosuppressed kids to get a bacterial infection but it is an added concern that the patch that was used to make the repair in his heart does not get infected. We are hoping that his peripheral culture stays negative for growth as the chances of the bug getting to his heart increase if it comes back positive. And once again that is a whole other situation if that patch becomes infected. So again prayers are needed.

His heart rate is a lot lower that what it used to be. We do know that before the surgery his heart was working three times as hard as what it should. Also, the ASD (hole in the heart) that was repaired is around the 'pacemaker' part of your heart. So we are not sure what is causing his heart to beat so low at times. Hopefully, it is part of the healing process and that it will normalize. It has been very scary as for the past couple of days his monitor has been alarming often.

On a lighter note....I left the hospital yesterday to do some birthday shopping for my little man. What fun?!?! We really can't afford all that I bought but man does Caleb deserve it and then some. It made it tough though as Brian was not able to be here with me to go shopping. Nonetheless, Brian will be flying in on the afternoon of Caleb's birthday, so we are excited. He really can't eat cake but Brian and I are going to go buy one so he can at least put his hands in it and get icing all over the place.

Again, I try to get to all of my emails, voicemails, etc. as soon as I can but it all depends upon what is going on here. I do appreciate everyone's support you are truly magnificent people-thank you so much.

OHHHHHHHHHHHHH the address as many people have been asking:
Duke University Hospital
Erwin Road
Durham, NC 27710
c/0 Caleb Hlebiczki
5th floor Rm 5123

God Bless you all!

God Bless Caleb!!

In a Regular Room

Yep, you read that right we are in a regular room!!! Quick thank you to Aunt Jen to send out updates-you have helped me a lot keeping everyone informed.

Bubber's electrolytes are getting out of wack again though, but they are wondering if that is related to his Tcells/gut issues due to his Immunosuppression.

He has been laughing a lot. Which you have no idea how much that melts our hearts. He is so darn cute!!!

His longer incision where they opened his chest doesn't look bad but the one where the chest tube was is a little red. So we are putting Bactroban on it and waiting on the Infectious Disease group to come and look at it and tell us what they think.

They did an echocardiogram before he left the PICU on Friday and they said there is a little fluid around the heart but nothing to be concerned about. They will do another echo in a couple days.

His white blood cell count is up but they are not really sure why. They are going to check it again tomorrow and see how it is.

All I have to say is what an amazing little boy we have. He is so darn cute and so darn strong. Keep up the good work Bubber. AND as promised I have a video! Enjoy!

Make video montages at www.OneTrueMedia.com

God Bless Caleb!!

Step Down?!?!?

Well for those of you who didn't get Aunt Jen's email. . . There is a rumor that Caleb may be going to a step down room today. This depends upon the results of an echo they did today. If all looks good and a room opens up we will be heading back to the floor!!!

Brian and I went over to visit with the nurses on the floor too to see if they had heard the rumor also and they did. They also are trying to pull some strings for us and get us a bigger room (as most of the rooms are very small). Thank goodness!

We also got a visit from Dr. Markert today and she will be on vacation next week BUT . . . she did say that if he continues to make baby steps in the right direction that they are going to start looking for Thymus Tissue for Bubber!!

His girth (belly) has been rather large and this happens when he feeds. They don't have him on his max volume of feeds because we don't think his gut can handle it at this time. We are hoping that his lipase and other enzymes along with his electrolytes stay with in the norm as they have since he has been out of surgery. However, we are not sure if bypass effected the enzymes or if the feeds being stopped for a couple days effected the lowering of the enzymes. . . we will have to wait and see.

Well all. . it is my turn to go back in and visit. I will post more later and will post the pictures as promised.

God Bless you all.

God Bless Caleb!!

Bubber's Heart

Hey all----well he is continuing to make baby steps in the right direction...hopefully he keeps it up.

They removed his drainage tube and his femoral arterial line. There was one level yesterday that was a little concerning but it has been staying down for now. In addition, his pancreatic and liver enzymes oddly enough are within normal range for now too. We are not sure if the enzymes were lowered due to being on the bypass machine or if was due to his feeds, which they started back up very early this morning. So maybe we will see if the feeds effect his enzymes.

He looks good. He wouldn't urinate yesterday for them but they gave him a diuretic and that helped a bunch. He hasn't necessitated any pain meds since yesterday afternoon----tough kiddo. His lungs sound pretty good! We are CAUTIOUSLY OPTIMISTIC.

One of the Allergy and Immunology docs took some pictures for us before Caleb was taken to surgery and we have taken some post op ones also so I will post those later this evening.

If all goes well within the next week, they are going to start screening for Thymus Tissue. BUT as Brian and I say it is minute by minute and don't let you highs get to high and your lows get to low.

Again, we cannot thank you all for the prayers and support you all have offered to us. You have all lifted us up so much we appreciate it very much. Thank you and please keep praying for a complete and healthy recovery for Bubber.

God Bless.

God Bless Caleb!!

Surgery Update

The picture at right is one that was taken a couple days before his surgery.


Well the surgery took half the time they thought. They did fix the hole and the triatriatum (the membrane that causes him to have three atriums). They were not sure if they were going to have to fix his tricuspid valve as it was showing a leak. They did not have to fix it, so that is good as it is close to the 'pacemaker' part of the heart. They think the repair of the hole and the triatriatum helped the tricuspid leak.

We finally got to see him around 8:30 lastnight. He has the 'normal' incision from heart surgery-one that goes from the collar bone to the sternum. In addition, he had two leads that were left on his heart that were there in case they needed to shock his heart at anytime. He also has a chest tube in to remove the extra blood from the surgery.

They were hoping to extabate (remove the breathing tube) him lastnight however he started to clamp down on the tube and wheeze so they decided to do more frequent breathing treatments through the ventilator and leave it in through the night.

He was extabated this morning. At the same time they removed the leads from his heart also. They have left the chest tube in and are hoping to remove it sometime today. He is still on many drips (IV's) to try to regulate the heart function as one side of the heart now is seeing less volume and the other side of his heart is seeing more blood volume. In addition, they are trying to regulate his blood pressure meds. They are hoping to have those well regulated by sometime this afternoon. They told us lastnight that the next 48 hours would be crucial as far as heart function.

He is pretty uncomfortable this morning so they are trying to help his pain with morphine and other meds.

We appreciate everyone's continual prayers, thank you so much. We ask that everyone continue to pray that Caleb's heals from this well and continues to make baby steps in the right direction.

Also, I want to thank my dear friend Jen for updating the blog and keeping everyone updated via email. We love you Jen and miss you very much.

God Bless you all!

God Bless Caleb!!

Prayers Needed, God Bless Caleb

I am posting this update for Sarah to let you all know that Caleb's open heart surgery has been rescheduled for tomorrow afternoon and it is very high risk surgery above and beyond the normal risks that exist with a surgery of this type (especially in someone so small). Caleb's lipase level has not regulated yet, nor have the other issues that have been going on with his liver and pancreas, however the doctors feel that his lungs are as stable as they have been in quite some time and therefore they need to move forward with the heart surgery now. His parents and families are both very nervous right now and they can all use your prayers as well as your prayers for Caleb's health and a successful surgery.

Please also pray for safe travels for Brian, Bernie Byrum (Sarah's Dad), and Ron and Jean Hlebiczki (Brian's parents) as they are on the road right now on their way to Duke to be with Sarah and Linda Byrum (Sarah's mom) to support Bubber.

God Bless Caleb and God Bless Sarah and Brian and their amazing families. I have to let you all know, and I am sure you will agree, that I have never seen people handle such a difficult situation with such grace, faith, love, and an amazing sense of family. The Byrum's and Hlebiczki's amaze me so and are such examples to all!! Thank you for letting us bear witness and be a part of your amazing family!!

Keep fighting Bubber, I am so sorry you have to keep going through this, but you are so amazing!!! WE LOVE YOU SO MUCH!!! God Bless Caleb!!

-Jen Straub (Aunt Jen)

Update

Well a lot has been going on and it has been tough to update due to late nights at the hospital and the network at the hotel not working. So on with the updates.

Caleb was put on the Operating Room Schedule for heart surgery for today, however, it was cancelled due to extremely high lipase (enzyme made in the pancreas) levels. The norm should be 200-250 and Caleb's today was 2500. They have done many tests to see what is causing the high levels and visually saw the gall bladder had some sludge (hopefully he will pass that) in it and that one kidney is larger than the other (which may be the way his kidneys are). At this time, they are not overly concerned at the kidney size difference. However, they are wondering if Caleb's cyclosporine (Immunosuppresent Drug) levels are effecting his lipase because they are not at the 'therapeutic' levels. They are wondering if he is stooling out his cyclosporine because he is still having diarrhea due to the immune issues and the cyclosporine was an oral med. They have now switched the med over to intravenous and hopefully will find the right level to make it a therapeutic dose and hopefully this will decrease his lipase enzyme levels.

Caleb's lungs sound clearer and a recent CT scan showed that the fungus/pneumonia is not as bad as it was before. Let's hope it continues to clear and doesn't spread anywhere else. He is coughing which is a great sign.

He also had some issues with arrhythmias with his heart and they are watching that closely also. The cardiologists do not believe this has anything to do with heart failure but they will be monitoring it closely.

There have been many discussions regarding Caleb's neurological status due to his illness as a catscan did show that the brain has suffered some 'injury'-the brain seems smaller. The neurologists say we should know with time how this will effect him. HOWEVER, Caleb did respond to my voice today and turned his head in my direction. He is still not tracking but we are hoping that this will come with time. He EVEN smiled and giggled today when I said something in his ear.

So where do we go from here....WOW what a question. The first step would be, if the lipase level should go down they will probably put Caleb back on the OR schedule for his heart surgery. One day at a time, then we will talk about what is to follow later.

There have been many things that have occurred that I have left out but I am trying to remember as much as I can.

We did have a couple visitors which was very nice. The minister from my dad's church, Larry Kline, came down to visit and brought my dad and we were able to pray in Caleb's room and spend some time with Larry and go to lunch and dinner. What a very nice visit. Thanks Larry and thanks everyone with Vance Church. And today Jo and Rick Terry stopped by on their way home from Hilton Head to peak through the window to see Caleb and to take my mom and I out to dinner. It was great to see them!!! Thank you both for coming to visit.

Emotionally how are we doing? That is the question we get asked all the time. Easy answer - you do what you have to for your child. He is a strong little boy. It amazes me so much what a fighting spirit he has. Every time before we leave his room, I tell him how proud we are of him, how much we love him, to keep fighting, give him a kiss from me and from Brian, and God Bless him. In addition, it is also very hard that Brian is at home and so far away. Caleb and I miss him so much. It would be so nice if Brian could be here with us more than just for a couple days at a time. It is also very hard on Brian. He is doing what he has to for our family. Of course, as you all know West Point Products fired me (that's a whole other discussion) when Caleb first got sick and was in the ICU in Pittsburgh, so Brian is our only income and has been since then. Imagine how tough it would be for your son to be ill and you are so far away and to get updates over the phone and to not be there even though you desperately want to. If there was some way I could get him here so he could stay down here with us I would!!! I love you Brian, thanks for what you are doing for us, we miss you very much.

Again, thanks to everyone for the cards, emails, phone calls, etc. We appreciate the wonderful support system you all have provided for us.

God Bless Caleb!!

Wonderful Posts by our CHARGEr Friends and Families

Okay so as I have said before we appreciate everyones' emails, comments, phone calls, etc. Tonight I wanted to post two post from our CHARGEr friends blogs that are asking for prayers for Caleb.
Thank you all.

From Mighty Max's website:

prayers for caleb
Our friend, Caleb, really needs your prayers. He is having a very difficult time and is now facing open heart surgery in the coming weeks. While this is desperately needed (doctors believe he may be in early stage of heart failure), his body is not at its strongest and therefore recovery will be much more complicated.Please pray for comfort and healing for Caleb and peace and wisdom for the parents and doctors. Thank you everyone. We are very worried about our amazing lil' friend.
Posted by Maxwell and Amy at 12:16 AM

From Eva Nicole Masionis' website:

Sending prayers to heaven!!Date: 6/10/2007
Today we are at my parents house and my mom came home with a balloon so the kids could send it to heaven to ask for more prayers for sweet Caleb. What a sweet thing to do!!




Hugs and Kisses,Eva Masionis and Family


Please note on Eva's website there is also a video of the children releasing the balloon please visit her site by following the link with Eva's name above to see the video.

God Bless Caleb!!

Meeting

I really don't know how to start this...

The meeting was held today and the docs pretty much said that Caleb's heart may be in the early stage of heart failure. Therefore, they believe the next step needs to be open heart surgery to fix his ASD (his hole) and his tri-atriatum (the membrane that is causing a division in is his heart that is making the heart look like it has three atriums). They believe this has to be done to prevent any more damage to the lungs, help him in the lung run for the Thymus transplant, and to help him recover quicker from any possible future infections.

Of course with any open heart their are concerns:

1. He will be on bypass and that does cause extra fluid in the lungs after transplant. This is a concern because Caleb already has some lung issues going on. He will probably not be the typical post op patient due to the lung issue. They said he could possibly go back on the oscillator again due to the fluid.
2. Caleb has fungus in his lungs. So they want him to complete his full course of antifungal meds before going to the OR. The concern with this is they use a piece of foreign material to close the hole. If fungus attaches to the material it would be a very serious situation and life threatening.
3. Caleb has other things that are going on right now that are not optimal for surgery: nutrition, elevated liver enzymes, etc. So we are trying to optimize these situations for the surgery also.

They did say today if the course of antifungal meds were done today they would have him in the OR as soon as they could. They are hoping that he can go to the OR within the next 2-3 weeks. I am leaving some things out but the main thing they stated today is that we are not starting out in 'optimal' conditions so we are not sure what his recovery will be like for the open heart.

So as always we would appreciate everyone's continual prayers for our Little Bubber.

God Bless Caleb!!

Daddy's Here

Well all, not a lot of new developments. BUT Caleb did make eye contact today with the resident and with me but then his eyes kind've went funky again. His eye movements this morning looked a little more fluid, but he still tends to look up most of the time. He has been off the morphine since 8 am this morning and (knock on wood) hasn't seemed like he needs more. They have it on standby if needed. But we are hoping once they continue to ween his withdrawal meds that his eye movements will continually get better. They also did a head Catscan today to check his ventricles to see if that in any way is related to the eye movements. This was done to check to see if the shunt is draining the ventricles properly. The ventricles do look a little bit bigger than normal, but his are big. . . so that didn't seem too surprising. The brain itself seemed a little smaller than before but they said a lot of kiddos who get as sick as Caleb has been tend to have this happen. They are not sure at this time how and if at all this will effect Caleb in any way. The old 'wait and see' game will let us know. In addition, Caleb was able to get rid of the extra fluid off of his body and out of his lungs. However, the 'fungus' is still there.

We have a meeting tomorrow with Cardiology, Allergy and Immunology, and the Critical Care Team, to get everyone on the same page and to see what the plan of action is in regards to the MRI and Cath I discussed in yesterday's post.

Finally, Brian was able to come down today, thanks to Jeff Petzack, to be here for the weekend. We have missed him very much!!! Thanks again Jeff we appreciate it so much!!!!!!!!!!!

Again, thank you all so much for your continual prayers. We appreciate it sooooo much!!!!
I will post tomorrow night and let you know what happens in the meeting and see what the plan is in regards to checking Caleb's heart, brain, and other related issues.
God Bless Caleb!!

Very Emotional Day

Well all I am going to try to make this short as it has been a very emotional and long day.

They are now wondering if Caleb is in Congestive Heart Failure. They have requested the Cath lab reports from Pittsburgh and are considering doing another Cath Lab here as he was so sick and things may have changed with his heart during this time.

In addition, they said his lungs don't look any better, in regards to the fungus, by x-ray. However, he is still extabated at this time. However, they said the fluid around his lungs is worse.

In addition, they are starting to get more concerned about his eyes. Opthamology came and did an exam today and said that they do not believe the fungal infection has spread to his eyes and his optic nerve looks good. But, they are wondering if his fungal infection has spread to his brain. So they are going to do a lengthy MRI that will check to see if the infection is in his brain, hopefully sometime tomorrow. They may try to do the MRI and Cath Lab tomorrow.

Dr. Markert (the Thymus Transplant doctor) told the critical care docs that she is not sure Caleb would survive the Thymus Transplant in the condition he is in now.

So that is where we are right now. We are very nervous and scared!!!!! Please continue to pray for Caleb.

God Bless Caleb!!

Our Little Man

Well all Caleb is peeing!!!! We are still not sure what is causing the fluid overload. The cardiologists are coming tomorrow to offer their opinion and see if they think the heart may be related in anyway.
His liver enzymes went up slightly today. The TPN (IV nutrition) was rehung (he was off it for a couple of days) lastnight so they are trying to see if the TPN made his levels go up so they are going to 'cycle' (not let it run over a full 24 hours - first time they are doing this in the PICU - usually they only cycle TPN on the floors) his TPN. So we will see in the morning if this effects his levels in any way.
They have started to wean his morphine because they are hoping his worst part of the withdrawal is over. His eyes are still not normal so we are hoping they will come back to normal once the meds are out of his system. However, he is still on Valium and Methadone to help him with his withdrawal also.
They have added an oral blood pressure medicine to get him off of the IV blood pressure medicine. They have also stopped his medicine that was a treatment for 'asthma' acting lungs. He is still on antibiotics though for his fungal infection and preventive measures also. They are many other meds that they have changed/stopped as Caleb was a VERY VERY sick boy and still is sick but we are hoping he continues to make baby steps in the right direction.
Again, I want to thank everyone for the phone calls and the emails I am trying to get to them as I do not leave Caleb's room in the PICU often as I am sure you understand. Thank you all again so much. God Bless you all!
God Bless Caleb!!

Our Little Bubber

Well the critical care team has decided to put the gall bladder removal on hold so we are happy for those results, that is.... as long as his enzymes stay within normal range.
We had some concerns today as Caleb is a liter positive on fluid at least it is not almost 5 liters positive like he was before. So what is causing the overload....not sure...could be an infection (yet his white count is stable for now), could be his heart (but his echo looks to be like his last one before he got real sick), or it could be the lack of nutrition as he has been off of intravenous nutrition and not getting a high dose of oral feeds through his ND (duodenum) tube. They are providing him diuretics to see if he will urinate. They tried lasixs and it didn't work so they are trying two different meds so hopefully that will work. The last thing we need is additional fluid to get into his lungs along with the fungus that is in there. So we are praying he can get rid of this extra fluid.
We would also like to thank Jeff Petzack for getting Brian a flight down here this weekend. Thanks so much Jeff we appreciate it so much.!!!!
In addition, we have met two other families in the PICU whose children could also use prayers Madeline Lynch and Parker Ramsey. God Bless them and there families.
In addition, I have just found out that our hotel has Internet access so I definitely will be able to update more often. I miss posting notes on our CHARGEr friends websites too so I am going to try to get back up to speed with that also.
We miss everyone very much. Thank you for the continual prayers for Caleb and our family.
God Bless Caleb!!

Biopsy Results are Back

Well the results of the biopsy are back and it shows signs of a blockage, however, the other test (MRCP) they did did not visually show a blockage. In addition, his pancreatic enzyme levels came down greatly and his billirubin came down also slightly. We are hoping those continue to trend downwards. The Critical Care team, GI docs, and General Surgery are all in debate if the removal off the gall bladder is needed at this time. If the levels continue to trend downwards tomorrow they are willing to 'wait and see' how his levels continue to trend and not push it as an emergent case. So we are praying they continue to trend towards towards normal range.
In addition, Caleb's EEG (brain wave activity) test came back and there is no signs of seizure activity.
He has been sleeping off and on the last 24 hours which is much needed due to the lack of sleep and withdraw. So we are hoping that he will soon get through that but it will take awhile as he is still on morphine, quanidine, methadone, and valum to help him withdraw. The morphine will be the first drug they try to wean once they feel his withdrawl is getting better. We are hoping that his abnormal eye activity is related to the withdrawl also.
As far as updates that is all I have for now, but he is STABLE and STABLE is great!!!
God Bless you all and thank you for your prayers.
Kiss your children often-don't take anything for granted. Cherish the smiles, the laughs, the funny faces, the eyes opening, cherish every little thing. Don't take anything for granted!!!
God Bless Caleb!

God Bless Sweet Caleb!!!

Sorry all for the delay again in updates. Usually I come on here on give updates with a very strong front. However, I have to admit the last few weeks have been very scary for Brian and I. It seems as soon as you get your hopes up that everything is getting better they walk in and tell you something else. However, we have good news. Caleb is off the ventilator and is breathing with the support of oxygen. The oxygen is a preventive measure as he was intibated for so long they didn't want to move him right to room air. However, they have found what they think is fungus in his lungs. Which Dr. Markert believes this is what brought Caleb into the ICU but did not show itself until later as fungus tends to do. However, they said the x-rays yesterday looked good. I haven't heard about today's x-ray yet. So they have started him on a different antifungal med as the older antifungul med can have side effects on the liver....which brings me to another development. Caleb's pancreatic, liver, and gallbladder levels have been elevated for the last two weeks. Caleb does have pancreatis right now however, those enzymes are decreasing so we are hoping that is starting to 'fix itself'. As far as the liver enzymes that is a different story. They continue to rise and they are not sure why. They finally considered him stable enough to send him down for a liver biopsy yesterday so we can hopefully find out what is going on with his liver. We are hoping that, if anything, the levels are up due to a medication or his IV nutrition he has been getting. The ICU docs are concerned that if his levels continue to rise at this rate he will end up in liver failure. They are hoping that we will get the results sometimes this afternoon. Caleb is also going severe withdrawal right now as he was on several different sedation drugs while he was intibated and since he was intibated a very long time and his liver is not filtering as well as it should he is having a very hard time coming off the drugs. He has been running fevers off and on and he had really not slept in 48 hours until this morning. He is now sleeping off and on which is great as it is very hard to see him so uncomfortable. In addition, they have begun fitting his feet, legs, and hands for splints to help him regain the support he needs in those areas as you tend to lose muscle control if you are under sedation for a long period of time. In addition, his eyes have been acting kind've funny and we are not sure if it is sedation/withdrawal related or something neurological so we are getting a test done today to check on his brain activity and then a CT scan will be done later when the withdrawal gets better to check his brain more thoroughly. We thank everyone for your prayers and I promise as I get updates I will post quicker. This is truly an emotional roller coaster and very scary and I am sorry again for the delay in the update.
God Bless Caleb.
Also the address is the same as before just put PICU instead of the room number.
**On a side note I have just found out one of our little CHARGEr friends needs prayers he is in the ICU after having his much needed heart surgery. Please visit Tate's website, link is posted up at the left. Also, please say prayers for our buddy Mighy Max as he is having some respiratory issues. God Bless you all we are praying for you.

Cautiously Optimistic

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!!!

Make video montages at www.OneTrueMedia.com

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!

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!!!!

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

Make photo slide shows at www.OneTrueMedia.com

WE ARE AT DUKE!!!

Oh we are here at Duke!!! Bitter sweet to say the least!!! It was very hard for us to leave Brian today...so hard. I already miss him so much. We love you Brian!!!!! Good news though...we are here!!! They have already started doing some tests on Caleb. They did their first set of blood work today and swabbed his cheek to get a better look at his cells. They didn't waste any time!!!
I just want to say to all of those that we left today at Children's Hospital in Pittsburgh (diagnostics, immunology, nurses, PT, OT, discharge coordinator, girls at the desk-who always buzzed us in :) ) we thank you again so much for all that you have done for Caleb and our family. You are all so special and were there for us on our good days and bad days and are truly amazing. What an amazing network of people on the 9th floor...truly amazing. You are our 'home away from home' and 'family'....THANK YOU!!!
Thank you to Jen, Jess, Andy, and Craig (spelling? sorry) who sent Caleb and I a care package. AND what a care package it was!!!! You two are my sisters and I love you both soooooooo much and miss you so much!!!
Chad, Jen, Sam, Casey, Stacey, Ben, and Hunter we love you all so much please send us pictures so I can post some pics of Caleb's cousins and also hang them in his room.
I cannot thank all of you enough-most of you that have read this blog have helped our family in amazing ways-reached out when we needed a hand to hold. Thank you so much and God Bless you all. I truly feel blessed to have you all as a part of our lives.
Again, I will post pictures and more details (address, phone #, etc) tomorrow. I just wanted to let you know we are here!!!!

Pi Kappa Alpha-Brothers-Family

When Brian was at WVU for College he was in a fraternity, Pi Kappa Alpha, and met several wonderful guys that I have had the privilege of meeting. Unfortunately, Caleb has not had the chance yet to meet them all, but they will all be in our lives forever so they will eventually meet our son.

Over the years I have seen Brian interact with his fraternity brothers at football games, weddings, picnics, etc. and it is amazing the bond that they all have. They truly are brothers. . . better yet family. And now the family continues to grow. Now there are wives and children that see what an amazing bond all of these guys have and feel comfortable being a part of the 'extended' family.

When we were flooded a couple years ago it was amazing how Brian's brothers were there in an instant to help. And now they are even more amazing . . . they have set up the Caleb Hlebiczki Medical Fund to help raise money for our family. They have set up a website (http://www.calebmedicalfund.com/index.html) where people/businesses/foundations can donate money to help us with the medical expenses we are incurring at this time. I truly hold all of them in high regard, they are amazing people that truly take care of one another. I cannot thank all of you enough. Caleb will learn about all of you and how you have helped him and our family. You all are angels in our book. Thank you from the bottom of our hearts and God Bless You All.

How To Post

People have asked me how they can post comments on Caleb's blog. Here are the directions. At the end of each post there is a line that looks like the following
Posted by Sarah at 11:48 AM 8 comments
Click on the link with the word 'comments' in it. The link will take you to another screen. On the right of the screen you will see 'Leave Your Comment' and a box below that. Before typing your comment in that box you must choose an identity. If you do not have a blog account click the dot next to 'anonymous' and then type your comment and don't forget to put you name with the comment as it will say anonymous.

I hope these directions are okay. If anyone has any questions, please email me at sarah_hlebiczki@comcast.net. Thanks.

What an Emotional Rollercoaster...

Wow, it has been a crazy and nervewracking week to say the least.

Monday, the immunology docs came into our room and indicated that Dr. Markert and others (NIH-National Institute of Health and a board at her hospital) have decided to go ahead with the Thymus Tissue transplant for Caleb. Again, they have never seen a case present in this fashion, however, they are optimistic that this transplant will work for him. There are other transplants that have been discussed, bone marrow and cord blood, but the drawback to those two options is that if either of those are done first they could never go back and do a Thymus transplant if needed. So Dr. Markert and her team have decided to go ahead and try the Thymus Transplant. The one stipulation given to us on Monday was that Caleb had to get a detailed Echocardiogram done along with an analysis at the Cath Lab. This analysis would decide which surgery comes first transplant or open heart.

Which brings us to the Echo and Cath Lab. Caleb went down to the Cath Lab yesterday morning to have an analysis done. He went down at 7 am and didn't go in until 8:45 am. They did a very detailed Echo and Cath which approximately took around five hours. We were then taken back to talk to the doctors to get the results. They indicated that the membrane that was found in the previous Echo is not posing any problems and that the smaller of the two ASD's (holes) closed. However, he still does have one significantly large ASD that is causing pulmonary hypertension. They have concluded that this ASD is the sole cause of the pulmonary hypertension. In addition, there has been no lung damaged caused due to the hypertension. The docs then had to discuss in their meeting, with all of surgeons from their practice, what they would feel comfortable with as far as treatment and surgical options. The scary part....when they tried to extabate (pull the breathing tube/ventilator out that is placed during surgery to help him breathe) his oxygen levels dropped and he turned blue twice. After those two extabation scares they decided to leave Caleb intibated and move him to the Cardiac ICU. A couple hours after Caleb was in the ICU they decided to try to pull the breathing tube and it went well. He was on oxygen for awhile but they removed that too while we had to leave the ICU during the change of the nurses. He came back up to the floor (his room) this morning. He is still wheezing so he is going to get a breathing treatment and is slightly dehydrated so he is getting some extra fluid.

The results are in as far as the cardiology meeting. They have decided they think Caleb would benefit from open heart surgery to fix his ASD early. As they cannot fix ASD's in the Cath lab at a young age. They think that while they are in repairing the ASD they will trim the membrane so it may not pose any problems down the road. Even though this is open heart it is better that he get his Thymus Tissue Transplant first then the open heart. That way any immune system function that may form, before the open heart, is better than none.

So is there a date for Duke?????? YES we are TENTATIVELY going on the 30th of April. YES that is right in about a week and a half!!!!!!!

So there are all the updates. Our little guy kept us and his wonderful doctors on our toes. We are glad he is back in his room and hopefully we can get his wheezing to go away and get him more hydrated.

God Bless.

Sweet Caleb

I just don't understand.....

Caleb's results came back from his Echocardiogram. He still has the ASDs, between his left and right artrium, they have found in prior Echos and the pulmonary hypertension in the right vetnricle. A newer more concerning finding is there is a membrane is his left atrium that was noticed before but posed no concern. However, during today's Echo they noted that there is increased blood flow through this membrane, which may show this membrane may be tightening and backing up blood flow. The next step....They will be doing a chest x-ray on Caleb early next week to check his lungs to make sure his latest mucus issues are not doing anything to his lungs. They will then follow him for a couple of days. If his lungs look okay they will be taking Caleb to the Cath Lab to do an Echo under complete Anesthesia. If this Echo still raises concerns regarding the membrane they will then Cath his heart to get some measurements to see if this membrane is causing an issue. If this membrane is causing increased blood flow, Caleb will then require open heart surgery to be done a couple weeks after he is Cathed. This surgery for little ones with an immune system is not a big risk, however, if needed we are not sure how this would effect Caleb.

I just don't understand when our little guy is going to catch a break. We just don't understand why ONE test can come back without any concerns. It just doesn't seem fair.

Results from Blood Work

Okay, so they don't think Caleb has GvHD (Graft versus Host Disease). It doesn't look like my cells are what they are seeing in Caleb's body. They are wondering if Duke may want to run the same test just to make sure they get the same results. Another idea that may be going on with Caleb's immune system is that it is taken awhile for his to 'spark'. If that is the case, he would be closely followed and then we would see if it would fully 'spark' or if may need help. As far as what they would do to help they are still not sure. They are still considering many test to see if his system needs to be given a chance to spark or if there are other causes for his immuno deficiency.

Caleb had his sedated Echocardiogram today, however, we haven't heard anything back yet on that. We are hoping that nothing has changed regarding the ASD (hole in his heart). We are hoping to hear something later on today.

Caleb also had a skin biopsy to check to see if he has Ehlers Danlos Syndrome. I have this syndrome (Type 2-Classic) along with my mother and one of my brothers so there is a fifty/fifty percent chance that Caleb has this Syndrome. If he does have this Syndrome it effects his healing, joints, tissues, etc. It is a connective tissue disorder. We probably wont know those results for awhile. Along with the skin biopsy they did another detailed chromosome test on Caleb to see if they see anything else that may tie the immuno issues with the CHARGE. Again, probably wont have those results for awhile.