Friday, August 23, 2013

Iron infusion

Today we headed back to our home away from home, Texas children's hospital. We had to be there at 8:30am for lab work and to meet with our hematology doctor. We didn't have to wait long to be called back, but had to wait about 30 minutes for the vat team to come up and put in an IV and draw some blood. In the mean time we talked to the fellow who wanted me to fill him in on tuck's history. I could probably tell it in my sleep by now, and with all the terminology I have now I swear I could be a doctor too;) anyways, he said he was eager to get it in on tuck's case because it was so interesting. What I'm sure he meant was his case is such an enigma and I'm sure to a doctor, they love a challenge and maybe discovering something new. At any rate, we welcome any new eyes and ears:) after our lengthy chat, the vat team came and went and then our doctor came in. He told us they were going to go ahead with the iron infusion (we were expecting that) and he proceeded to explain all the risks and how it would all go down. He said that the hope is that they "fill up his tank" and hopefully his body will respond and continue to replenish, if not we will have to do an infusion again. There is a slight chance that his low hemoglobin levels may not be due to iron in which case a blood transfusion may be necessary, but he doubted that would be the case.

From there we headed to the infusion area to find a spot. We didn't know what to expect and we were nervous. What we found was a big open room with lots of chairs and couches, a lounge and a playroom area. Tuck spotted the toys right away so we went and found a spot over in that area. Tuck played around with toys while we waited for the iron to be ordered. It took about 2 hours then they finally got him hooked up. They started with a steroid first to help in case he had an allergic reaction. After that they did a trial dose of the iron then we had to wait an hour to make sure he didn't have a reaction, which he did not. At that point they started the iron that would take 2 hours, we were originally told 3 hours so it was welcomed news:) basically, tuck did really well! He only slept for about 30 minutes the whole time. He was in such a good mood and so cooperative and smiley:) he had two nurses that loved him! One kept giving him chocolate pudding, which he loved! So after about 9 hours, 2 chocolate pudding cups, lots of vital checks, hours of iPad entertainment oh and some iron, we were done! Tuck passed out as soon as we got in the car, poor guy:)

All in all, it wasn't too bad. It was obvious we were the "newbies" especially since I had to borrow a phone charger and was told 'you must be new';) the people around us were all very nice:)

It's amazing how God is always at work even when we don't realize it. I have been dreading this infusion and feeling so helpless with all tuck is going through. I even had a bit of an emotional breakdown yesterday. I prayed about it and today walking into that room and seeing so many sick children with their devoted families by their side really warmed my heart. It was obvious that a lot of those families were 'regulars' and getting things like chemo. It again made me realize how blessed we are. Tuck may not have a diagnosis and our journey is by no means easy, but it could be a lot worse. Please say a prayer for all the sick children out there tonight and make sure and thank God for your healthy little ones, my eyes have been opened to a whole new world. We also had the privilege of meeting an amazing family. When we first arrived a sweet girl approached us and offered tuck a stuffed animal. Her mom followed behind and explained that they always brought stuffed animals to give out when they came. I was floored. They also made us feel so welcome and sat and talked to us for a while. We learned that their sweet daughter, corby, suffers from a blood disease and is getting chemo as a treatment. They all had the most positive and amazing spirits. We were so blessed to have met them and I know God had a hand in it:) her sweet mother has already posted on Facebook about tuck and asking for prayers, so grateful! So I ask all of you to please keep sweet corby in your prayers as well:) I am just blown away by all the work God has been doing in my life through all of this, from strengthening my faith, to opening my eyes, to all of the amazing people he has placed in our path. Gives a while new meaning to the song "our God is an awesome God" because he truly is!

Ok enough of all the wordiness! I also got a call from our gastroenterologist on the way home. She had the results of his biopsies from the scope procedures. Basically all looked good with a few minor inflamed spots, but the main area of inflammation wasn't as severe as it has been but now labeled more as a chronic inflammation, which makes sense considering he has had it for some time. Because it was so late she hadn't discussed with our immunologist but will next week at which time they will come up with a plan. We are also hoping to have the genetics testing results back and have an answer. I will continue to update my blog. Hopefully this will be the last informative post for at least a few days, we are ready for a break:)

Again, thank you to all for your thoughts and prayers this week, they were felt and much needed. Sorry for the long post!! Here are a few pics from today. Hope all have a great weekend!

Love and blessings,

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It's a yes!

It's a yes!
how it all began...