Day +162

Day +162 We have been given the okay to try food again! ! Katlyns ng feeds are only up to 40 ml/hr but we are thinking 70 might be too high and we might need her to eat to get some calories as well. She is one happy little girl. She had a lot of tummy aches yesterday with the food and was scared to tell me but I assured her that it was normal her stomach would be bothered since she hasn't ate in so long. She feels stuffed because her belly has shrunk so much. So hopefully we keep moving forward and get this girl home soon. She is much stronger and has so much more energy. It will be amazing to have her at home with all of her toys and craft supplies. Her bloodwork has been excellent as well. Not much to complain about thankfully. Finally all electrolytes have stabalized and her marrow seems to be getting stronger. We are still patiently waiting for her t-cells which are due anytime now. These are the necessary ingredient to help Katlyn fight a real infection. I pray they come soon.

Day +158

Day +158 still no plans to go home but everyone is trying so hard to make that happen. Hopefully soon though. I did want to share with everyone some great news though. I spoke with the nutritionist today about Katlyns weight. She mapped it out and she is now in the 50%!! She also charted her weight and height and she is ideal weight for her height. This is amazing!! Katlyn is now up to 27 kg, up from 19.7 kg in November. Katlyns doctors, specialists, nutritionists and nurses have worked so hard with us to get her healthy and have done amazing work. She is strong and has lots of energy. We are working away at trying to get her feeds up and her tpn down so that she can get home. Hopefully soon!!

Day +155

Day +155 Not to much has changed since my last update. We have tried a few things but still have no real answers. Every time we feel like we are going forward, it all comes to a crashing halt. It is very important to get Katlyns ng feed up to 70 ml/hr to go home, but at this point she cannot tolerate it. We are all so frustrated and exhausted. We want Katlyn better so we can go home. She is gaining weight nicely and is no longer vomiting, but only because of the lack of food and tpn and lipids, which cannot be done at home. We are all trying to stay strong but its getting hard. Katlyns spirits are great, so that helps, but this is a long bumpy road. We are waiting on Katlyns latest norovirus test. If she is still positive we are going to try treating her with something (not sure of name yet). She has been taking flagyl, which treats bacterial gut infections, and she has responded well. Just not well enough for freedom yet. There is a possibility we may go up on that as well. We will see what happens. Hopefully we can work out a good plan soon before all three of us go crazy lol.

Day +141

Day +141 Not a whole lot has changed with Katlyn. She has lots of of nausea and vomiting. Last I posted we stopped the enzyme. We did attempt to restart it yesterday, and Katlyn got very sick very quickly. We stopped it today, and she started to feel better a few hours later. We have been going around in a circle trying to figure out what is going on. A scope was performed over a month ago, and we no longer feel as though this would be necessarily applicable to now. Things may have changed. So she is going to be having a new scope done with lots of tests and biopsies to see if anything has changed. In the meantime we will stop the ng feedings and Katlyn will be on clear fluid only. She will get all of her nutrition through tpn and lipids and nothing in her gut, to give it a break once again. This break had not done much in the past, but hopefully this time it will calm things down. Hopefully we don't find anything wrong in the scope, but it is very important to rule out gvhd, new viruses and bacteria and parasites. It may just be that the flora in Katlyns gut is all wonky because if the antibiotics. In a healthy person you could use probiotics to correct this, but unfortunately not for Katlyn as she is immune compromised. This is by far the hardest and scariest thing we have ever gone through with Katlyn. I can really see it is taking it's tool on the the of us. Please keep us in your prayers, especial Katlyn.

Day +139

Day +139 the enzymes have been stopped because Katlyn started to have increased nausea with vomiting. 24 hours after the break, the enzymes do not seem like the culprit for the vomiting. It seems as though her stomach is not emptying quick enough so the formula just sits and makes her feel sick and then she throws up. This seems so crazy because at the same time everything is going right through her, and that's increased a lot over the last couple of days. This is so frustrating because noone really seems to know what is going on. She looks like she has lost some weight again. We really need prayers right now.