Monday, November 3, 2008

Surprise Visit

Yesterday we were expecting Katharine's sister and her husband (Aunt Kim & Uncle Rick), driving up from Virginia for the day, but were pleasantly surprised by Grandpa as well (Katharine's Dad). It was a planned surprise and Elias was thrilled to have visitors! We did get plenty of photos that I will work on getting up as Elias allows me the time. I will also share their photos once we get them as well. The day was nice and relatively calm by his standards. Elias was fairly active and up to it, with lots and lots of smiles. Everyone got to hold and play with him for a bit. It was also a very welcomed distraction from our very busy and intense schedule and routine. Sometimes, as anyone who has children with medical needs will confirm, it is nice to talk to an adult that is not a medical professional.

As for the what has been going on with Elias medically the last few days, basically the same. On Friday night we decided to pull out a half cc of fluid from the G-tube balloon. We knew that was what was causing the problem from past experience. While it is true you normally have 5 cc of fluid, Elias' stomach size and the incredibly poor positioning of the tube does not allow that to happen. Two and a half is the most we have ever been able to put in without issue. So that is what we put it back to. Guess what, the leakage stopped, the vomiting stopped, problem fixed...maybe. So far nothing of interest has manifested itself, but two and a half cc was what we had when it kept falling out, so here is to continued cooperation. After that experience we will NEVER allow them to put fluid into the balloon without very sound evidence it is needed.

Elias has been rather irritable the last 48 hours, with exceptions. He is certainly fighting sleep. He went 14 hours without sleep on Saturday before we finally got him to sleep. We still believe he is getting close to cutting teeth, but have none of the normal evidence. His output, particularly his ostomy, is somewhat concernedly low, but then it seems to pick up again. It is an up and down cycle that we have been reporting to the doctors. They are keeping a close eye on it, but have yet to offer any cause or remedy. So Elias simply has a hard time finding a comfortable position and falling asleep. Poor little guy!

They have scheduled Elias' next esophageal dilitation surgery for November 19th. This will be his first outpatient surgery, and while he has been through this surgery several times previously, it is still slightly nerve wracking. Should we experience any issues with the G-tube between now and then, we will certainly be very persuasive on redoing that while he is already under anesthesia for the dilitation. It would certainly be as good an opportunity as any, but as you loyal readers will attest to, we have had this opportunity before and they let it slip away. That is about all the time I have for this update. I will follow up with the photos from this weekend ASAP!!


  1. Thanks for the compliment about my blog. I'm not a "blogger" per se, but try to maintain it at my BFF's request. Your little guy is adorable. He is lucky to have a great mom sho is such an advocate for him. I know it's hard dealing with the healthcare system. Stay strong!

  2. Thanks for stopping by my Blog! Your little boy is so cute and adorable, I wish you all the best!!
    Love, Jannet

  3. Best of luck with the dilation. I'm sure a trip back to the hospital is NOT what you folks really want to do right now though. We initially had to push for Benj to have IV fluids beforehand when he was so small as with jtube leakage that both of these boys have it is real easy to get behind on fluid status when they have to be NPO for a couple of hours before procedures like this. Just thought I would let you know that we now demand that for him. We didn't last week because he (finally) hit the 20 pound mark and we felt we were in the clear. This set off a horrible week of hypoglycemia and degydration- something we had not experienced for quite a while. Just thought I would let you both know this. Our prayers will be with you both and Elias. Lori

  4. My prayers are still with you guys and i am praying for nothing but the best, i know everything will work out for you guys it may not seem like it and it probably seems like there is no light at the end of the tunnel, but I promise there is i have been where your at and i understand to some extent what your going through. Our son has esophageal dilations every week. The g tube well that all makes since reading what you said. Just be persistent and dont give up and never loose the faith. I love fallowing your blog, sometimes it brings tears to my eyes, and i dont even know you guys personally. I will be back again and stay strong!


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