saturday 9/21/2013

Long overdue update.

Ava's esophagram, a precursor to G-tube surgery, was moved up a week....as was the surgery. Her esophagram was on Traday at the exact time I had to pick up the boys from school, so I missed it. She also didn't have a primary nurse that day. I only mention that because not so good things happen when her primary nurses aren't working with her. The contrast dye was administered by radiiology by bottle! It should have been done by sending the dye down her tube. She aspirated the dye and they cut the study short.  There are so many problems with this I didn't know where to start. One, she has never had a bottle feed in her life. She has maybeee taken 2mLs by bottle about 2 weeks ago with a therapist and radiology somehow got 5mLs in her. Well NO KIDDING that she aspirated. They had NO BUSINESS giving her a bottle. Two, they cancelled her practice bottle feedings that therapy so painstakingly mapped out after a big swallow study and many sessions of therapy. Cancelled-based on the aspiration in radiology. Because they gave her the bottle and had to cut the study short, the results were sub-par. Four- EVERY SINGLE feeding experience for Ava is supposed to be positive. The moment she is uncomfortable, we quit. Nasty tasting dye forced in does NOT help this oral aversion that has been created already. I found out these details on Wednesday and about 9pm I spoke with the NP and then I spoke with the attending. I really ranted about my concerns. I also ranted the next day to the therapist, the next nurse, and the surgical team who was rounding. Aspiration like this can cause horrible horrible things for Ava-like lung infection, oxygen support, IV access and heavy antibiotics and even intubatn if the lung can't inflate. We've been down this road more than once.      Also That day (Thursday) and that night- Ava did not have a primary nurse who knew her OR one of her primary NPs - OR even an NP that knew her at all. So when I got there I found that they had a bunch of labs ordered and another urine analysis. I pulled the mommy card here and vetoed all of it. You cannot randomly order labs on Ava. They haven't been able to get enough blood for most labs ordered for weeks. They've even had to get blood that would normally be found in a heel stick-from her finger tips instead. ouch!   I did not feel that "being fussy" all day warranted multiple jabs for labs that likely would be for naught anyway. She had 2 other urine analysis done within about 8 days so that seemed pointless too.  Anyway- that was thursday-- actually Thursday night.

Friday I went in with a little bit of fire. She's been gagging and retching even with the food going right into the small intestines. We have not gotten to the bottom of this, but yet had a scheduled G-tube surgery for Tuesday. That did not seem Ok to me. WHy would we go through the trouble of placing a G-tube when she would need to be fed into the small intestines anyway. Within about 2 hours I was able to talk to the NP, a 4 man surgical team, the attending, and the therapist. THAT is impressive for a Friday afternoon!! I told them my concerns. They agreed and cancelled the surgery and ordered an upper GI Study instead. Thankfully the NP hopped right on that and got us scheduled for Monday at a time when I could come...because of course a primary wasn't working that way. Her primary nurses are so important at this point that we were going to reschedule it for a day a primary nurse was working if I couldn't make it. So Monday, they will back her NJ tube up into the stomach, making it an NG and feed her through that. The food will have contrast dye in it. We will watch her reflux (probably vomit unfortunately) and watch the food on X-ray and decide if she aspirates it into the lungs and if she can handle the reflux. It does not seem like a pleasant test. This is the next step- there are multiple roads based on the results of this test.  I feel a little guilty about getting the G-tube surgery cancelled, but it was scheduled without respect for the current situation which is a severe reflux and it must be addressed first. 

The nurse tonight was talking about equipment we'd have at discharge and how important it will be to watch her if she vomits because she could stop breathing and that she might have to be on nearly continuous feeds at home.....and telling us that we wouldn't be leaving the house much except for doctor's appointments. We kind of already knew that..and it was kind of no fun having someone reinforce it. Not bad that she said it, but just kind of sucked to think about more seriously since we are closer to discharge. This sounds so corny because in reality every single day is closer to discharge no matter where it is in the process. It's a nonsense way to feel better about your situation. Everyone seems to be prematurely excited about us coming home in October just because that is my prediction. Really, my prediction is just fantasy and no one should get their hopes up based on my predictions. They really don't mean much as I have learned. No one working with Ava is mentioning any timeframe for discharge. No one will even offer speculation because Ava keeps pulling out surprises...like this puking thing-out of the blue. 

On other fronts: The boys had a rockin' birthday party today. Since Ava had heart surgery 2 days from their birthday last month we postponed their party until Ava was stable and until the boys made friends in their new pre-kindergarten class. We invited 18 kids from their class and 7 kids plus a few siblings came. It was at the park by our apartment which the boys LOVE because it has a merry-go-round. The pavilion was rented so shaun brought tables from Idaho for the food and gifts. It was super hero themed. The boys wanted a hulk/captain America party. It just so happened that the Avengers party-ware was on clearance at zurchers (meant to be)  and I cleaned them out costing me a whopping 18 dollars. We got everything from decorations to plates to favor boxes to table cloths to the scavenger hunt and much more all in one shopping trip-lovely! We had the whole playground to ourselves except for one little boy who pretty much assimilated into our party anyway. The kids painted shields that Shaun had made with cardboard and silver duct tape and I had painted white. Then I made balloon swords to go with them. We abandoned our scavenger hunt game because of the wind. We had LOTS of good food and two cakes-a green one for the hulk (William's) and blue for captain america (Sam's). They had a blast and the parents had a good time too! As usual we will be eating party food for the next week..and eating party chicken for the next month out of the freezer.    As a side note- it is 1:15 in the morning and I just saw William come out of his room and get his new remote control car. I told him he could sleep with it but not play with it or else he'd wake G.G. (great-grandma). William said that his favorite part of the party was the merry-go-round which shocked me because he said this with his coveted new car in hand. Sam said that his favorite thing about this party was "that Alexis and Aurora came." I though this was very cute. During this season,  I think it was important for the boys to see their parents go out of their way for a special party just for them. The boys helped fill the favor boxes, decorate their cakes, and decorate the playground. They were so excited all week that they kept making "lists" of things they needed for the party. They'd call out something and then say "check" and make checkmarks on a piece of paper.