We went to the Childrens Hospital (it's actually a wing of a main hospital here in the Springs but is partnered with Denver Childrens) today for more bloodwork. We sent Caileigh to VBS with my Mom (who volunteered so we could get a discount for registration, THANK YOU MOM), Soapy and I headed to the hospital with Braedon.
Do any of you have those mornings where your child(ren) are just being exceptionally happy and good? You wonder when is it going to unravel and pray that it never ends?? Well, that was our day today. Braedon was all smiles and giggles all morning. He waved at everyone as we walked to the outpatient lab and was so pleasant and well mannered. I hated to take him in so they could stick him, I knew it was going to make his mood turn south.
Well, it took three of us to hold him down but they were able to get it in the first few seconds and soon after that the blood draw was over! I was surprised by the small amount they drew but she assured me it was enough for the tests so we said our thank yous and goodbyes and headed out the door. Braedon was understandably upset....that was until we saw a therapy dog on our way out and he got to pet the dog and then ride the rest of the way out in a wagon (he loves the wagons). The boys dropped me off to teach dance and then picked me up, upon arrival Braedon was asleep.
We got home and I noticed we had a message on the home phone so I played it. "Mrs Martin, this is D from the Outpatient Lab. I need to talk to you right away. Please call me immediately." --Not the kind of message I was hoping for but I called her back: "It seems when we printed the faxed lab orders from Denver that only 3 of 10 pages printed. We need you to come back as soon as possible so we can draw the rest and get it sent with the draw from this morning."
Not what I wanted to hear. By this time, Soapy was packing for work, my mom and Caileigh had just gotten home and we were preparing to go get lunch so that later today we could play in the kiddie pool I had set up this morning. Instead we had lunch, said our goodbyes to Daddy and headed for the hospital...again. Braedon was still in such a wonderful mood, I was dreading this second trip.
Sure enough, we needed 6 more tubes of blood and I had the priviledge of holding him myself. :( Not a happy Mama. We left with handfuls of stickers as the nurses felt so bad and then felt worse once Braedon waved bye and blew them kisses (that mandated atleast 5 more stickers). His mood however had turned and not in a good way. He never recovered and to say I was glad to put him in his crib is an extreme understatement.
All in all, they tested for Cystic Fibrosis (this time as a blood draw so it will take 4 weeks for results, the sweat test is within 24 hrs but I had no desire to do that again and have it not work a second time), several immunoglobulin disorders and a few more autoimmune disorders as well. We still don't have results back on all the genetic tests yet but I don't really expect anything for another 4 weeks atleast. It is a long process but a necessary process none the less.
Please continue to be in prayer for these tests and the ones we are waiting for already. We have his 24 hr EEG scheduled for the end of July unless they have a cancellation. This past week he has been doing much better GI wise and I can't recall a starring episode this past week but his sleep has been very restless and at times the GI stuff looks as though we may be heading into another episode but so far so good. We are so thankful for that.
Thank you everyone who is reading this and praying for our son and our entire family. We so appreciate all the prayers, tips and words of encouragement that we are getting. It helps get me through some of the time when Soapy is away. Eventhough my parents are here all the time, it is hard as the parents to be apart when your child needs both of you there.