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!!
