• D:

    Well, we are not going home on Tuesday after all. The doctors had planned on putting Namine on C-Pap (not a ventilator, but a high pressure air flow that would assist her breathing but would not breathe for her) on Monday, but never did. We happened to find this lovely bit of information out on […]

  • :(

    Well Paul and I have been sick so we haven’t been able to go to the hospital. We call everyday to find out how she has been doing and the nurse tells us that she is doing fine. We find out tomorrow if she will be coming home next week or not. We have to […]

  • Home in 2 Weeks

    Well it has been a long wait, but we are hopefully coming home in two weeks. We had a care conference with the docs today and they told us that they are not going to do surgery on the artery until she has her “glen” procedure. Which is a sigh of relief for all of […]

  • Maybe, Maybe Not

    Well the G-tube was a success, but we do not know when or if we will be able to come home. When they did the G-tube they also did another bronchial scope because she keeps dropping her stats. When they went down and took a look they found that there was a mass pushing against […]

  • G-Tube A Success

    The doctor came back to tell us that Namine’s G-tube operation was successful. The nurse told us beforehand that it would take an hour and a half, but I think it was a mere half hour, if that. They just came out again and told us that one of us could come back and see […]

  • G-tube Monday

    At least, tentatively. Namine is doing well with her feedings, but she’s still unable to meet the volume required for her age and size. Consequently, she needs a supplement in order for them to send her home. The NG tube in her nose has to come out, so that means one thing: G-tube. The plan […]

  • Feeding

    This past weekend Paul and I had a discussion with the speech therapist and the GI Team about possibly having to place a G-Tube.  We do not want her to have one unless it is absolutely necessary.  They had not really been working with her on her oral feeds and wanted to push the tube.  […]

  • THANK YOU!!!!

    The benefit dinner was awesome.  There were so many people at the dinner and the concert it was just super.  I had a blast at the concert and also just remincsing with friends and family that I haven’t seen in long time. Paul, Namine and myself just cannot say thank-you enough for all of the […]

  • Trac Change and Cares

    Well everybody, Paul and I have started the trac cares and changing. It was and still is scary. I do not like doing the trac changes but the tie changes are ok. It is still all a little nerve wrecking, but it is just one obstacle that we will get over, like all the others. […]

  • I said-uh, beef hot links

    So we keep getting asked, when is she going home? Getting closer every day, that’s all I know for sure. But aside from the typical Zen answer, the only thing left is feeding. Well, that and training. When I say Hillshire, you say Farm! Jess and I sort of did our first trach care today. […]

  • Hold Me

    Namine is now back on the fourth floor. Most importantly, this means that she’s off the ventilator, hopefully for good. She’s now on the humidifier (which looks sort of like the vent, but they’re not the same). Some more great news, she can now be held. But remember kids, she’s not a football. Jess and […]

  • Trach Collar

    Hey guys. I went to visit Namine last night, and the nurse informed me that she (Namine, not the nurse) had the trach collar on since 9 in the morning, and she’d been doing really well all day. That girl always surprises me. Her trach site doesn’t even look all gushy like most kids’ new […]