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"

Thursday, May 21, 2009

Come on Immune System....WORK PLEASE

Okay well today the fourth set of blood work was taken to test Caleb's immune system.

This round of bloodwork was taken in a little different manner than in the past. In the past, Caleb had a central line (a IV line that is more permanent than the general IV you would get for a short admission in the hospital) and I would draw the blood and then my dad would drive to Children's Hospital in Pittsburgh where it then would be shipped off to Duke. Well, as you all remember Caleb's central line was removed awhile ago so we had to make plans this time for Caleb to get his blood drawn and to make it even more 'new' for us we were going to try to get it drawn at our local hospital where they are not familiar with our little 'bubble boy' Caleb. This was very nerve-wracking for me for many reasons this morning. One, I know Caleb has pretty much no veins left for them to draw from as all his veins have been damaged from all the IV's and sticks he has endured through his lengthy hospital stays and two, that this hospital is not familiar with our immuno-suppressed little man and I am not sure how they were going to be regarding the isolation precautions and accommodating to our special situation. I am happy to report that both my apprehensions were put at ease. From the point of registration to the time we left, the personnel were fantastic and accommodating to our needs. Of course, we were starred at by other patrons because Caleb is kept under a rain cover in his stroller to protect him. He doesn't tolerate wearing a mask anymore, he actually rips it off. But once again, the staff was superb. My dad went with me, as Brian had to work, and he was the 'dirty/contaminated' person, so he handled all the paperwork and signing of papers so I can hold Caleb and tend to his needs. After we registered, Dad went and asked if we could wait outside until they were ready to take Caleb's blood. They were fantastic, they came and got us and took us directly back into a room when they were ready. The techs were amazing. They got blood from Caleb on the first stick and wore all the proper gear (masks, gowns, and gloves). If anyone reads this who knows anyone at Wheeling Hospital, please spread the word on how much I appreciate how fantastic they were to Caleb and accommodating to his situation.
So my dad is on his way to Children's Hospital in Pittsburgh to drop of the blood were it will then be packaged and shipped to Duke. Thanks Dad for all your help today, you were a HUGE help. I love you!
We are praying really really really hard that the bloodwork shows his T-cells are functioning and his immune system is functioning at a level at which maybe we could do some 'normal' activities with Caleb and have some confidence in his ability to fight off bugs and viruses! Now the waiting game begins....one long month of waiting...come on immune system please work!

God Bless you all!!

God Bless Caleb!!

Tuesday, May 19, 2009

Growing Lil' Boy

Well the title of this post says it all! Our little boy is growing up. So many updates:

Well where do I start...

Clinic Appointments:
Caleb finally got to see some of his doctors at Children's Hospital in Pittsburgh for much needed clinic appointments. Once again, we try to wait until the end of cold and flu season to hopefully limit the possibility of exposing him to nasty bugs. Yes, bugs and viruses will always be around, but if we can take him when the threat is a little less that is better for him. We got to see the new Children's Hospital. When we were driving into the parking garage, Brian and I gave Caleb a little speech and told him we didn't want any overnight stays at this hospital, just clinic appointments. The hospital is gorgeous. I am just really hoping we never see an inpatient room, we have seen enough hospital rooms.

So the first doctor we saw was Dr. Frangiskakis, pictured at right with Caleb. This is Caleb's acting Pediatrician. She has watched over Caleb from his first admission to CHP until now. She was so happy to see him. She said he didn't look like a baby anymore, that he looks like a little boy. We went through his development with her and the big discussion was his feeding orally or the lack thereof. She, Brian, and myself agreed that if Caleb does not improve with his feeding by the next time the immune tests come back, with hopefully good results, that we are going to do an in patient feeding clinic with him. The rest of the appointment went well. We noticed an ear infection which he was put on drops for. The unfortunate news is that Dr. Frangiskakis is leaving CHP to go back to her home state. We will miss her so much, she was so wonderful to Caleb and our family. We stayed with Dr. Frangiskakis as his PCP as she was acting as his 'quarterback doctor' - she kept all his specialist docs in Pittsburgh involved and updated as well as communicated with Duke. However, there is no time like the present to get Caleb back to his primary PCP here in Wheeling. We are ecstatic as this is such a big milestone for Caleb.

The next following week we saw was the Cardiologist. They haven't seen Caleb since before he went to Duke. The original plan that the CHP Cardiologists would do his open-heart surgery to fix his ASD's and his Triatrium when we got home from Duke. But that plan changed, as you all know, when Caleb went into heart failure when he was very sick at Duke. So, Brian and I were expecting a very long appointment. Brian and I were both very nervous about this appointment as Caleb has been having some lower heart rates. Surprisingly, they did an EKG and listened to him and they said that based upon what they heard they did not believe the risk of doing an ECHO, because of his immunosuppression and what he may be exposed to, was needed because they said he sounded great. The doctor indicated the lower heart rate is what a 'normal' heart should do. Yes his may be lower than others, but as long as he is perfusing well (blood is circulating well into his extremities) and he is not changing colors or passing out then it is all good. Then the bigger news, we don't have to see Cardiology for a YEAR! We were in shock. Really....we were expecting to be handed slips of this test and that test and to come back in two weeks. But nope, we don't have to see them for a year. Way to go Caleb!

So since we had some extra time, we thought we would stop by and see our friends at Cleft-Craniofacial to say hello! They were always so great to all of us. We were shocked when they said to go ahead and bring Caleb in and they would just go ahead and see him to (he was scheduled for a clinic appointment for the end of June). They are so great, they know how far away we live so they slid him into their schedule to see him for his repair check-up. His plastic surgeon, Dr. Losee, said Caleb's scar looks great. We asked him about a white spot on Caleb's gum-line. Dr. Losee indicated that is the scar from the palate repair and not to worry. He said the repair looked good and by what Caleb is trying to verbalize now he believes the palate repair will work well in regards to speech! WOOHOO What a day!

Feeding Update: I realized the other day that the current approach to feeding wasn't working. So I tried another approach and I am so very happy to report that I am able to get Caleb to eat about a half a jar of feed about twice a day. Never thought that day would happen. The bigger shocker was one night when I was feeding him at dinner, he looked thirsty, so I handed him a sippy cup, and he DRANK FROM IT! Brian and I were ecstatic to say the least. I hope that Caleb continues to feed well. The first bite always seems to be the toughest, but then he does better with every bite after that.

Girls Day:
I finally, after three long years, got to spend some quality time with my two great friends Jen Straub (white shirt) and Jess Tuschong (white and brown shirt). Most of you are familiar with these two blessings also. As Jen sends out email updates on Caleb and has updated this blog for me when I couldn't. Jess, created the page about Caleb on Facebook which kept hundreds of people updated also. These two girls have been awesome to Brian, Caleb, and myself throughout the years. They have done so much for us and they continue to do so. I was pampered by the two of them by a manicure and pedicure and lunch! It was so nice to see them. When we were hugging to say goodbye I didn't want to let them go. I love you both so very much thank you for a wonderful day! I had such a great time.

The following week, I was pampered by another friend, Alana, and got my hair done. Thanks Alana it looks great!

I love you girls! Thanks for the pampering it was so nice! Love you!

Okay so are you ready for the biggest update?!? Brian and I last week had enough of being shut-in and decided to take Caleb to the Oglebay Zoo. We were hoping that there wouldn't be many kids there as it was still pretty early in the summer and we lucked out. There was noone there. We were able to take the cover off the stroller, that we usually use to keep him in a 'bubble'. It was so much fun. When we walked out into the zoo. I almost broke down. But I held it together. We had the zoo to ourselves and it was probably the best time we have had in years. A highlight of the visit was we stopped at the concession stand to get a drink (which is a big step too because even this is a germ exposure possibility, but we wiped everything down) and the lady that was working the concession stand asked how old Caleb was and we told her almost three then she said 'what a healthy looking three year old'. She had no idea what those words meant, wow our child looked healthy! The only part of the zoo, we really couldn't do was the train ride, as there is no way to make that a 'clean/contamination free' experience. But we had a blast. We wanna go back, but we know that we lucked out that it was not that crowded. It would be nice if we could do more things like that for him. What a day! So much fun! We didn't want to come back home!

Thanks for checking in on us, sorry for the delay in posts, as you can see we have been very busy!
God Bless you all!!

God Bless Caleb!!