maybe something good will come of this

It seems that everytime I update here (since I do it so rarely when inpatient) something good happens afterward, so we are going to try this out and see if it makes something happen.

So, last Saturday ( the 15th) Quinn's belly just wasn't acting right. That morning, she was pretty distended so I decided to stop the feeds and put her on just pedialyte with sugar to see if that might help her distension. Throughout the day, it was obvious that it was doing nothing. She was getting more and more distended... Even with just the pedialyte. I wouldn't even let her drink anything (even though it just gets drained out). She was still acting ok, but the belly was doing her no justice. I put her to bed, like usual, but she started to complain of an aweful lot of belly pain. I did my best with what I had available to me and tried like hell to keep her home, but by midnight, Quinn's abdomen was rock hard and she was in complete agony. I rushed her to our local er where we found out that Quinn's entire gi system was completely full of air and that her large and small bowel were very dilated, she also had a large amount of stool and her air fluid levels were absolutely not good. Translation: Quinn had yet another bowel obstruction (just short of 2 weeks after her last one. Quinn needed morphine to control the agony she was in and we were told that it was too dangerous to continue feeding her. I was able to take a peek at her film and from my standpoint, it waS definitely not good. All I saw was a black abdomen. You couldn't even see her intestines. Everything was black. She was transferred to children's hospital los Angeles (yeah, not loma linda). Her doc said she needed tpn... No questions asked.

Chla is definitely better for her. They are treating her as a whole and not ignoring any of her symptoms. The communication between docs and specialties is amazingly wonderful! Way more than I could ever say about loma Linda. The first couple of days were torture. Quinn was obviously pretty sick. She looked sick. She was pale, her face was swollen. She didn't even get out of bed for almost 4 days. On Sunday, she started blowing ivs. And by Monday, she had been poked more times that I can remember (at least 15 or more). She lost all access and within an hour, her blood sugars started to crash. We had no choice but to try and keep her sugars up in the 70s until we could find a vein by running pedialyte with sugar. We had a last ditch effort and she was able to hold one (BARELY) for 12 hours. Finally, she went in for her picc line on Tuesday morning. Quinn's arms are very bruised from all the torture, including one very large one about the size of a silver dollar.

Quinn had a huge tube shoved down her nose on Tuesday to try and help with releasing the air. It is on intermittent suction and she was also started on golytely on Monday to try and help the stool to come out. She has had 5 xrays in one week and she has shown little progress. Quinn's last Xray was yesterday and it still showed a significant amount of air in her small and large intestine as well as loops of dilated bowel in her small and large intestine. We all expected improvement, but so far, we have seen none. Yesterday, Quinn was hooked up to a rectal, gtube, and jtube drain, as well as keeping the tube in her nose on suction. Quinn still continues to have no bowel sounds. She has yet to poop since they stopped the golytely a couple of days ago. Even when she was on the golytely Quinn's poop was acid yellow and burnt the crap out of her poor butt.

The original plan was to get her cleaned out and try her on a new formula, depending on how well she tolerated, we would go home on either PPN and the formula, or just the formula if she tolerated well. Tolerex is the new formula they wanted to try on her. They were going to add micro lipids and try her on magnesium citrate for the bowels. Day by day, that plan seems to be getting blown out the window. We have yet to successfully decompress her and she continues to become visibly distended. We are measuring her belly now and in one day, it is 2 inches bigger. Tomorrow, Quinn is expected to have an Xray again.

We also started her on another course of flagyl. The doctors seem to be leaning towards sending her home on full tpn now. Tomorrow, Quinn will have another Xray. I am honestly not anticipating any manor changes in this one again... Both good or bad. Quinn hasn't pooped or farted since we stopped the golytely Friday. She complains of pain when pushing meds. Her j tube is draining brown. And this air that is trapped in her seems to be in all the wrong places. Places that none of our drains are able to get to. Tomoriw I will try my best to be mama bear. I want answers. I want a plan. This whole week, we have been sitting around waiting for her bowels to wake up... Well, they haven't yet. I want them to tell me what we will do after this Xray. Either advance feeds if it is ok (a given), but if its not, I need a plan. Even if we have reached the end of the road and Quinn needs to go home in tpn temporarily. At this point, I would deal with whatever I had to, but I think Quinn is showi g us that something different needs to happen. The kid is just not tolerating feeds. She lost so much weight. Even being on tpn for this whole week, she has only managed to gain 0.4 lbs. She's 38lb, still a 4-5 lb weight loss since the end of August. So, k hope that tomorrow will bring us good news or at least a plan so we can work on going home.

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