Sorry for the lack of updates today. This is the first time I have been able to sit down since early this morning before the kids woke up! It's been a crazy day! Kellsey is doing better overall. Her fever broke today, finally, and it's stayed down, which is great! The redness on her belly seems to be fading, but the lump right above her G-Tube is still hard and the surgeon is saying that is infection and she is not going anywhere until it's gone. She seems to be doing well on this new combo of antibiotics.
I've been on the phone today with the nutritionist, and at the urging of one of my friends here online who also has a child with Ds and eating issues and a G-Tube, I asked her to consider switching Kellsey from the pediasure to a different formula that would be easier for her to digest. I pointed out that she came from an orphanage where she got VERY poor nutrition (especially hydration) to here where it's been a battle for the last 2 years, and even the little that she WAS drinking had to be SO thick that her body just wasn't used to all the fluids. I get that they want her to gain weight, I do too, of course, but my main goal with this g-tube was to prevent aspiration and keep her safe. To me, gaining four pounds in two days, which is what she did, is NOT keeping her safe. They are overloading her with fluids that her body can't digest and I think her whole system just freaked out. Did it cause the infection? I don't know. But either way, she was getting over 1,500 calories a day which is insane for someone her size who wasn't even getting half that before. There's always a risk too that she could start refluxing with this g-tube which could cause her to aspirate from the bottom, up and that would require yet another surgery for a nissen fundoplication, which is pretty involved from what I understand and I'd like to avoid that if at all possible. So, I asked her what she would give to a newborn who just got a g-tube and she mentioned a certain formula and I told her that that is what I would like for Kellsey for now and at a MUCH slower rate than what she was getting. She said she would have to talk to her ped since he wrote the orders for her feeds and I said that was fine. A couple hours later Frank texted me and said they were starting Kellsey on the new formula, and at half the amount from before. :) Hopefully her body will handle this much better... and if not, we'll adjust again. It's all trial and error for now. I really do like her ped a lot and am so thankful that he listens to my concerns!!
In other news, Kellsey had some fun today at the hospital... she got to meet some princesses, go trick-or-treating and some other fun stuff. Frank took pictures which he sent to me which I will post once I go through them. The other kids had a great time at their school parties and trick-or-treating at my friend Carmen's house tonight. It was a beautiful day here, though it got a little chilly once the sun went down.
Tomorrow Kennedy and I have to be in Denver for her surgery at 9:45. Frank, Carmen and Donna are rotating at the hospital with Kellsey and then either Frank or I will be back there tomorrow night. As long as Kennedy is doing 100% ok and is going back to school on Wednesday, the plan is that I will go back to the hospital with Kellsey. Kennedy usually does great with tubes, so I'm thinking this is how it will go. I should have more downtime tomorrow so I'll be better at updating on both girls. I am hopeful that Kellsey will be out of the hospital by Wednesday... it's birthday week in the Garcia household and I would love for our whole family to be together more than anything!!
OK I really must sleep. I didn't sleep well at all last night and haven't since before Kellsey's surgery so I feel like I'm running on empty. Maybe tonight is the night!! I will get Halloween pictures up ASAP, hope you all had a fun and safe night!