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!!