Immune Bloodwork Clarification

So I need to clarify what is going on with the immune bloodwork as many people are asking questions and I just feel I can explain it here....

So over three months ago I got a call from Duke explaining that due to some new research they were going to stop Caleb's Immunoglobulin infusion (pseudo-immune infusion) and Bactram (medicine to prevent him from getting silent pneumonia) and see if he could maintain his IgG levels on his own (IgG: the part of the immune system that fights bugs). They indicated they would wait three months and draw the blood and check. If the bloodwork looked okay then he would stay of both meds, if not they would resume the meds.

The bloodwork was scheduled to be done at the end of July, a week short of three months since he got the two meds mentioned above. Fortunately enough, I did get any other bloodwork needed from other docs grouped with this bloodwork so he wouldn't have to be stuck more than once in such a short time as Caleb does not have any good veins left due to how many times he was accessed during his lengthy hospital stay and how damaged his veins are to the harsh antibiotics, meds, and IVs/central lines he had. This bloodwork usually takes around a month to yield any results. However, sometimes it comes back in as little as two weeks.

So before we left for the beach I did send them an email asking them if anything was back yet as even though we would thoroughly clean the beachhouse and stay there and limit outings, it is still a chance of exposure. So I just wanted to see if they had anything back yet. They indicated that they should have something within the next week or two. Well time passed and I heard nothing. This past week I was getting very anxious and sent them an email asking them if anything was back and I was told they would be coming back into town and would get back to me. Then yesterday morning I get a call from a new fellow that works for the Allergy and Immunology department with Children's Hospital in Pittsburgh. I was not able to get to the phone so she left a voice mail indicating that Duke wanted an IgG level drawn. So that was how I found out that the IgG level wasn't tested int he last batch of bloodwork, I was very upset. Then what made it even worse was as the voice mail went on the fellow said that when Duke asked for the bloodwork she said to them that we could 'just wait on drawing that level until Duke needed more bloodwork' . I was livid! Who is she to make the call on when the IgG level should be drawn. Does she know that Caleb has lived in a bubble for over THREE YEARS and this level could give him some freedom?!?! Did she not think it would be wise to call me and see what I think!?!? Are you kidding me?!? I then tried to call her back and got the wonderful automated message. So I then sent Duke an email indicating that I did not agree with Children's fellow regarding waiting on pulling an IgG level as Caleb has now been without these vital meds for over three months now. If he does need them he could be in great danger as flu season is approaching and the H1N1 virus is another extreme added concern for him. We now are waiting to see when Duke will be ready for his blood. Then we will have to wait atleast a month for the results, then we will be right into flu season, and if he needs those vital meds....one is an IV therapy and I have to get the new script, pump, etc and that cannot be done overnight.

So I hope, as you read this, you can understand why I am so upset. We are getting very close to flu season and Caleb has not had these meds in over three months and is virtually unprotected if he needs them and is not maintaining his IgG levels high enough. Also, I was hoping if we got these levels back it was going to yield some good news and we could get him out to do some fun stuff before summer ends. We know that this winter would be scary either way due his immune issues. But there are a couple weeks of summer left and it would of been nice to know if we could have been able to do some fun activities with him.

I just am having a rough time with this...

God Bless you all!!

God Bless Caleb!!

**Immune Bloodwork Update**

So......

They didn't check the IgG level with his last set of labs....I am bummed. Really bummed. Now we wait for another blood draw to be scheduled and pray he has a vein to draw from, wait a month for results, and pray. It is even more scary as flu season is approaching and he has been without any IVIG, pseudo-immune infusion, for over three months and the other strand of flu, H1N1 could pose a great danger to him.

I am very bummed....

God Bless you all!!

God Bless Caleb!!

Surgery Scheduled

Hello all, well first an update on the cold. He seems to be coughing less and the congestion isn't as bad. So we are praying that he continues to fight it!

We still have not heard from Duke regarding his Immune bloodwork! UGH

Also, as far as the wish with Make-A-Wish to tear down the house next door. They say they can't buy property. So now on to trying to decide on another wish. I did ask them what about remodeling our basement to make it a play area for Caleb. I did explain to them that the foundation would need repaired as it was slightly damaged from the flood a couple years back and can get wet and therefore, it would need to be sealed better before making it a safe play area for a immune-compromised kiddo. She said they don't do construction....OI VEY I want to pick something that he can appreciate over time, and not something that only lasts for a day or a week, but I am really struggling with another idea!

Surgery: Well Caleb is scheduled for surgery on the 15th of September to get tubes in his ears, as cleft lip and palate kiddos generally will have tubes for the rest of their lives, and his last set are out. He also needs circumcised. If all goes well they are telling us that he could go home the same day. Now we know in the past that Caleb has had issues letting them extabate, pull the breathing tube out that they put in during surgery. So we are hoping his lungs behave and that he will let them extabate and he can go home on the same day! This would be a whole new world for us....going home after a surgery. WOW!

Once Caleb recovers from this surgery, we will schedule a hearing test. All past hearing tests have been done under anesthesia by a brain stem activation. It has been explained to us that brain stem activation and a normal hearing tests can show different results. So we are praying that the results will show that Caleb's hearing is a little better than what the brain stem activation tests show. We shall see!

Special Prayer: My mom is going in for surgery on the 1st please keep her in your prayers!

God Bless you all!!

God Bless Caleb!!

Immune System, Meds, or Both?

Well, this morning was the first morning since Caleb got his cold that he didn't wake up choking on phlegm. So, could he possibly be kicking this cold? If so, is it the meds, or maybe his immune system is working, or a combo of the both? I am hoping the later. We still haven't heard from Duke regarding his blood work, but if he continues to improve, I am encouraged to think that there has to be something, even something little, in regards to his immune function. It would be great to know that there is something there especially as we will be heading into another flu season in a couple months. That is the scariest time for us as the flu can pose such a great risk to the healthiest of people, so we are really praying that we will soon hear some good news regarding his immune function.

Also a couple special prayer requests. Please pray for my sister-in-laws family, Stacy Byrum, as this past week her Uncle passed away. God Bless him. Also, a little friend of ours, who I have mentioned on here before, is fighting yet another infection. This little one, Moriah http://www.momentswithmoriah.blogspot.com/, is undergoing tests to see if she has the same immune deficiency as Caleb. Please keep her and her family in your prayers also.

God Bless you all!!

God Bless Caleb!!

Cold Go Away and Feeds

Well, the cold is still here. I have it also, and Bri woke up this morning not feeling the best and I am scared he is gonna come down with it too. So this is one persistent bug going around in our house. YUCK. Caleb is dealing better with his breathing treatments he gets every four hours. Kind've ironic, he used to get a treatment every four hours in the hospital when he was in there for over a year and half straight and even for awhile after he initially came home, and they didn't bother him at all. When we started the treatments for the cold, he was very mad. So it is a good thing, that he is mad and that these treatments are not second-nature to him anymore like they used to be.

As far as feeds...I am happy to report that Caleb is willing to eat more by mouth. However, he is not taking enough to maintain his weight so we are still supplementing via his feeding tube. He still does not know how to chew so we are working with that along with his SEVERE aversion still to drinking. If we were able to get him over his aversion to eat then I am keeping the faith that I can get him to drink. This is hard though as I have read through research that kids with these aversions, especially since he never has taken any liquid by mouth, that they feel like they are drowning when taking a drink. So this is going to be a battle but we can do it! It just might take time.

I still haven't heard anything from Duke regarding Caleb's IgG levels and if he maintained them on his own. It will be a month on the 22nd since the blood draw so we are really hoping we hear something soon. It is crazy that next month will be two years since Caleb's transplant! Wow what a journey....Brian and I were reminiscing the other night on the deck about the journey we have been through the past three years and all I can say is WOW. We have been through a lot. I guess when you are going through it you take it one day at a time and don't realize how much you are going through, the whirlwind of emotions: you feel so tired, scared, defeated, happy, sad, etc. I can't believe what we all have been through as a family. I am blessed to have such an amazing little boy with such determination and fight and an such an amazing, supporting, and loving husband. I love you both so very much, my boys!

Also, for those who haven't seen them yet there are pictures of our beach vacation a couple posts down the page!

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Cold Update

Well we were right. Caleb did catch a cold somewhow while we were at the beach. I took him to the doctor yesterday morning, so nice to see our local pediatrician again, she is so awesome! And she said Caleb did get a head cold that then settled into his ears and lungs, yielding a double ear infection and bronchitis. Hence, Caleb is on two anitibiotics and a prett pricey nebulizer (breathing treatment-$400 for the course of nebs) Thank goodness Dr. A had some samples to give us for the nebulizer. It was so neat to be able to take my kiddo to the doc and to bring him back home. I have never experienced that before. We will watch him closely and see if he can clear some of the junkiness by Monday. If not we will go back to the doctor and see what the next step is.

As far as the immune bloodwork, we still haven't hear anything.

I also want to appologize for not updating regularly. We just we planning for the beach and were very busy! I will get back on the schedule of updating more often.


God Bless you all!!

God Bless Caleb!!

Beach Vacation

Yep you read that right, we went to the beach! I didn't want to post about the upcoming trip as I was afraid I would jinx it and we wouldn't get to go, but WE DID! Wonderful friends of ours so gracioiusly let us stay in their beach house in Georgetown, SC. Brian, Caleb, and went along with my parents and my brothers and their families. We had so much fun. Caleb got used to the water and by the end of the week if you held him by his tummy he would doggy paddle. He had one bad day at the beach due to sand in his eye. Other than that, it was absoloutely terrific and none of us could have asked for anymore. It was amazing. Thank you friends for allowing us to stay at your house, we will be forever grateful for your generosity towards our family!


Another first: we took Caleb to a restaurant for Bri's birthday, we were fortunate enough to get a corner table with noone around us and it was great. We were out in the public with our son and he ate babyfood for dinner while we were there. It was awesome. I think that was probably the best birthday gift Bri could have ever gotten.

Caleb unfortunately did develop a cold while we were there and we are heading to the doctor early in the morning as it is still not getting any better. Hopefully, we will hear something from Duke soon in regards to his recent bloodwork that will allow us to rest a little more easily.

Here are some pictures of our trip to the beach and more will come as my brothers send me the pictures they took! I have a lot of more updates but wanted to post the pictures as I know you all would appreciate them!

Photo and video editing at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Another year....Our baby is Three

A little over three years ago Brian and I found out there were health concerns noticed on ultrasound with our baby boy. Our pregnancy was followed closely and we were blessed with a little baby boy on July 12th 2006. He battled for his life for over a year and a half straight in two hospitals. We were able to finally bring Caleb home a little over a year ago. It is amazing to say that last week we celebrated his third birthday. Yes our strong baby boy is now three. Three amazing years....long nights, unbelievable battles, and many lessons learned. Thank you Caleb for teaching me so much! This little boy has such an amazing will and has taught us and so many other so much. Thank you Caleb! Momma and Dadda love you so much! We are so proud of you! Happy Birthday little man!

The video montage below is the beginning of what we hope will be a lot more firsts, hence the delay between posts we have been busy and loving it!

Make video montages at www.OneTrueMedia.com

Hug your loved ones often and tell them you love them. Take nothing for granted and enjoy all of the little things!

God Bless you all!!

God Bless Caleb!!

Fun Times & New Items

Kenny Chesney Weekend
Wow! So we had a taste of 'normalcy' and loved it! We lucked out and got an early check in for the hotel for the Kenny Chesney concert. I actually found out the night before that we were granted an early check in so I told everyone we were leaving early 9 a.m. sharp and thank goodness because the traffic, as we could see from our hotel window, got REALLY bad about a half hour after we checked in. So it went well, we covered Caleb up and got him up to the room, I then sprayed the room down with Lysol and all our bags that had just been lugged through the hotel. Then we all relaxed and settled into the room. Who knew a hotel room could be so exciting. It was awesome. We had an AWESOME view of the point so that was great for Caleb that he could see stuff from the hotel window.
My Mom and Dad were great. They were great at wiping stuff down, they are just as used to it as Brian and I. Dad took Caleb for two walks down to the point too while we were at the concert so Caleb could see the boats and celebrations down by the Point. Dad was great he took antibac and didn't let people get close to Caleb. Thanks Mom and Dad. So Bri and I were off to tailgate to see some friends we haven't seen in years! We love you guys! We missed you so much! We finally got there and it was so much fun! After tailgating it was time to go in! OH MY GOSH! It was awesome!
We had soooooooo much fun. The lineup was amazing! The concert went so fast! Already excited for next year!
On the way home we decided to stop at a Sonic, since we don't have one around here, and eat lunch. This is also another big step as we took Caleb out of the car and sat at a table. We sat at a table were there was noone else around and wiped it down so we weren't 'contaminated' and then we ordered lunch. Another amazing time, yes eating lunch can be amazing. The reason why it was so awesome was, after we were done eating Brian and I ordered sundaes. We both hoped that maybe if I offered Caleb some ice cream, maybe he would take some and sure enough he did. He ate half the sundae, no joke! Yes, I got choked up, but who wouldn't right?!? So great! Great ending to an awesome weekend!

Immune System
The other day we got a phone call from Dr. Markert's head nurse, Stephanie. She wanted to let us know that some of the 'protocol' has changed. Just to remind everyone, the transplant Caleb got is still experimental, so the 'protocol' (criteria that is stipulated in the study to be handed over to the FDA periodically until the transplant is accepted as an approved non-experimental procedure) can change based upon new research. The bone marrow unit, which is a unit that conducts a lot of research on immunosuppression, just came out with some new findings. To make a long story short, based upon some of their new findings, they have changed some of their protocol. Once some of Dr. Markert's kiddos reach certain levels post-transplant, the bone marrow unit indicated that some meds should be temporarily discontinued to see how the immune system does on its own. These meds are bactram (the med that is taken to prevent silent pneumonia) and Immunoglobulins (the infusion that I give Caleb weekly for his 'fake' immune system that maintains his IgG levels). Then two months after these meds are temprarily discontinued blood levels will be drawn to see if these kids can't maintain their IgG levels (their immune levels that can fight bugs). If the IgG levels don't stay up, the Immunoglobulin and Bactram will be restarted. Well...Caleb was one of those kiddos that was picked to stop the meds, based upon some of his immune levels in relation with the new research. So...yes I am nervous, but I am anxious to see what his levels show in two months. Hopefully his immune system can maintain its levels without the help of the Immunoglobulin infusion that I gave him weekly. During my conversation with Dr. Markert's nurse, I did ask if his last labs came back and she said they did, Caleb's immune system yielded a 15 fold response. The one before that was 13 fold, so we are a little better. Their protocol would like each child to yield a 20 fold response, but once again, this is 'protocol' and Dr. Markert admitted that this level may be decreased to as she is not sure if 20 is too high of an expectation for every child to hit. I think she will get a better idea of what is a good response number when she sees how these kiddos that she has picked to temporarily discontinue these meds due without the meds for two months and where their response was at that time. While I also talked to Dr. Markerts nurse, Stephanie, I asked her if we could take Caleb certain places, and she said yes...just not places where there are a lot of people and where people would be hugging and kissing him. She indicated his baptism and church should wait, which is tough as we miss our church family! One more step towards normalcy?!?! We'll see...We are praying that Caleb's immune system can maintain its own levels over the next two months. This is a HUGE test! Hopefully his immune system passes!

Back to Dr. Archbald
So we are back to seeing Dr. Archbald. It was soooooo nice to see her and all the nurses! We got caught up on everything and she got to see Caleb for the first time, since he was about four months old when she wondered if he had an immune issue. She told us back then that he needed to go to Children's to be tested and she was right! So we finally got to see her again and it was sooooo nice! She noticed that his ears are pretty full of wax so she wants him to go to see ENT to get the cleaned and that after that she wants him to get a hearing test done as she is not convinced, like Brian and I, that he is as deaf as what we were told. The previous two hearing tests were done under anesthesia and by brain stem activiation. This would be the first 'real' hearing test. Also, while we go see ENT we are going to try to see Orthopedics (to get his hips checked) and Urology both of these specialties haven't seen them in awhile and she and Brian and I want to get a check-up and then hopefully, just maybe, not have to see some of these specialties in a very long time. We also made a group decision to take one more of Caleb's boluses away during the day to see if that will make him more hungry, so we can try to get him to eat more by mouth. It was so nice to talk about other normal things, potty training, time-out, etc., with Dr. Archbald. We all laughed as Brian and I know about IV's and a lot of extreme medical stuff, but some of the typical stuff we didn't know and we got to ask Dr. Archbald. It was so great to see her and know now that if need be we can call her and go see her than rather having to go to Pittsburgh every time. We missed you Dr. Archbald.

Well that is it for now as far as updates. I do have more, but this post is long enough. So check back soon!

God Bless you all!!

God Bless Caleb!!

Kenny Chesney and a Hotel Stay

For years Brian and I have gone to see Kenny Chesney when he comes to Pittsburgh. Of course, when Caleb was sick and in the hospital we didn't go, but we are planning on going this year. It is an all day concert on Saturday and Brian and I are going to try to go see as much as we can. Needless to say, it is not like we can leave Caleb at home in Wheeling, an hour away, with a babysitter as there is a lot to take care of and we would feel safer if he was closer to us while we were at the concert. So we asked Caleb's transplant/immunology doctor, Dr. Markert, if she thought it would be safe for him to stay in a hotel, so he could be near to us while we are at the concert. She said it would be fine for him to stay in a hotel. So we are very excited! We were originally thinking about going Friday and Saturday, but with the limited vacancies and the expense of the available hotels, we decided to go up early Saturday morning and pray we can get an early check-in. Of course, I will go into the room before he goes in and spray it down with Lysol so it is 'clean' and then we will take our disinfecting wipes to wipe stuff down. Hopefully, the hotel will allow us to do an early check in so I can get the room 'cleaned' and him and my parents settled before going to the concert. My mom and dad are going to babysit while we are at the concert. I have to admit that I am a bit nervous as this is the first time he is staying somewhere other than in our home. But, I will feel more at ease knowing he is closer in case of any emergencies. We will try to stay 'clean' from the point we leave home until we check in and then Brian and I will shower when we come back to the hotel from the concert to disinfect ourselves, just like we do when we leave the house. As always, we will keep Caleb protected in transit via his rain cover bubble we put over his stroller. He doesn't cooperate with the wearing of a mask, so the rain cover works well also. This will definitely be a whole new experience, and probably nerve-wracking, until we get him settled and in the room. But maybe this can be one smaller step towards normal.
So right now I am in the middle of packing. I already have one suitcase for medical supplies only...wow!
I will let you all know how the experience goes ...

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!