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

Monday, August 31, 2009

I'm out of my funk

I was talking to Duke today regarding scheduling the IgG level draw and we are going to try to get it done while he is at Children's on the 15th for surgery to avoid multiple sticks. While sending emails back and forth I inquired about the rest of Caleb's labs as I knew Dr. Markert, took the report with her over the weekend to review.

She sent me the following in an email:
'Dear Sarah,

Flow (T cell numbers) and proliferation (T cell function) both looked great. The report states that the T cells and naive T cells are stable but in fact the naive T cell numbers continue to increase. It is a beautiful essay. Caleb was better than the controls on some of the functional assays.


I actually had to read it over and over again. To believe what I was reading. Caleb is better than the control on some numbers?!? Which ones, I don't know, but some he is better than the control. I am a mess. I have to say I have been in one heck of a funk the past few days and this is exactly what I needed to get my out of it. `Hallelujah! Oh wow! WOW WOW WOW! I am praying his IgG level will look 'just as beautiful' !

On a side note: she does want us to get him vaccinated to H1N1 so now I have to find out about the special process to get him a vaccine in time!

Special prayers for my mom tomorrow as she has a knee replacement done and for our little friend Eva, see the link to her page at right, as she just had hip surgery today.

God Bless you all!!

God Bless Caleb!!

Saturday, August 29, 2009

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!!

Friday, August 28, 2009

**Immune Bloodwork Update**


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!!

Sunday, August 23, 2009

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!!

Thursday, August 20, 2009

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!!

Wednesday, August 19, 2009

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!!

Monday, August 17, 2009

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!

God Bless you all!!

God Bless Caleb!!