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!!

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