Friday, February 25, 2011

GI issues :(

First - I love having a nurse for Tomas. It is so reassuring to have another pair of eyes on him. She has worked with him for 7 days now and only had one uneventful write-up. She is definitely getting lots of multi-system experience. I even left her with Tomas and ran the girls over to the library the other day. It was a quick trip, only about 40 minutes, but it was just so nice to be able to focus my attention on them. Bonus, we started school back up this week and managed to finish everything on their lesson plan, and went to go see a children's concert at the Dallas Symphony Center yesterday (with nurse and Tomas in tow).

So Tomas: Tomas, Tomas, Tomas...
He is having GI issues. This past weekend he started retching again. A few minor episodes, and then on Monday a fairly large one. He had an appt. with his surgeon anyway to look at a mass by one of his scars, so it worked out well because I am concerned that the hiatal hernia repair may be giving way. The surgeon looked at the mass and said it could be scar tissue or could be the abdominal hernia opening up again. He would put orders in the computer for the GI to check it out when Tomas has the endoscopy. As far as the retching, the surgeon checked an x-ray from January that showed the repair in place. That's all great - but he wasn't retching in January. For now he thinks it could be a stomach virus.

As the week progressed, the GI issues worsened. By Wednesday he cried after being on the J feeds for only half and hour. I can't switch to pedialyte or take him off feeds because of the hypoglycemia. It is J feeds with formula or ER for IV fluids. With the nurses help we were able to reduce the rate and figure out how much sugar to run through to keep his glucose levels stable. Slowly increasing I was able to get him back to normal by yesterday afternoon. His nutritionists were out this morning and he has lost 7 ounces in the last 2 weeks. He has not slept in 3 days, and not slept well in about 2 weeks. He is actually napping right now, and I pray he sleeps for several hours, but it hasn't happened in a few days. The longest time he's slept for since Friday is 1 hour and 40 minutes. He moans in his sleep and is clearly uncomfortable. Poor baby, if this is just a virus it is taking its toll.

My husband has started hi job in NJ, and will be travelling back and forth, which makes me all the more grateful for the nurse. I tried calling the new hospital in NY to get the ball rolling with transfer of care. I was transferred 4 times and then disconnected. This is going to be a long road. And if somebody doesn't start sleeping soon it is also going to be uphill!


  1. I'll make you a deal! Even though we are moving to different places, I'll give you advice that I get and you do the same for me! I'm so worried about getting Jax moved, I can't stand it. I need to start making lists of things I can't forget. I was just thinking that we are going to have to have a house bought before we move, so that we can have all of his equipment delivered before we get there with him. I have to leave my feeding pump here because I don't own that, so I'm going to have to get one delivered there so I can bring it here to travel down with! So much to think about. My hubby will leave me here alone for a few months as well, not looking forward to it since my medically complicated kid gets ZERO nursing hours! I'm so glad that when we move he should qualify for their waiver. Finally, some much deserved help!

  2. Ok, I tried to find you on facebook, but I don't know your full name. You can email me.

  3. So glad you are loving the nurse but so hating that Tomas is struggling with tummy issues.Praying for a turn around and praying for you all as you enter this new chapter in all of your lives.