Day +190

Katlyn spiked a fever yesterday and she has been admitted to our local hospital while they run some cultures and start her on antibiotics. Hopefully it's nothing big and we are back home soon. She really has come around a lot since yesterday so I think she is starting to feel better. She also no longer has a fever.

9 years old

Oh how amazing it is to spend this wonderful day with this beauty at home. What a sweet blessing. God is good. HAPPY BIRTHDAY Katlyn Demerchant. XOXOX

Day +186

Day +186 Not a whole lot going on except for being extremely cute. Katlyn has been doing awesome. She has been playing out in the snow everyday and doing lots of crafts and playing in her room. Her menu of foods that she can eat is increasing slowly everyday. Bacon is even on the menu! ! We were lucky enough to be home over the past two weeks. We will be heading to Halifax this week for Katlyns ivig and bloodwork. Not a whole lot going on for this appointment but I just know they are going to be so pleased with Katlyns progress! ! She has been able to maintain her weight. We are just patiently waiting for her tcells so that she can get out of isolation. Katlyn turns 9 on Thursday! ! We are so lucky and grateful to have her in our life. Please keep Katlyn in your thoughts and prayers.

Day +174

Day +174 I'm so happy to announce that we are finally home! ! And it's awesome. The new medication Octreotide is working wonders and keeping our girl safe. The unfortunate thing is that this medication can only be given iv or sub q injection, so Katlyn has to get a needle in the morning and in the evening. The volume is pretty high and it is extremely painful for her but she is already finding ways to cope. She really truly amazes me with how brave she is. Katlyns target for her ng feeds was 70 ml/hr but after they did a calorie count of the food she was getting by mouth (over 1000 calories) they decided 55 was enough. There seemed to be a difference in the way her body absorbed the medication between iv and sub q so yesterday did not look so good for us and we thought for sure we were not leaving. They increased the medication and already we are seeing improvement. She is like a completely different child from before. She is almost to her old self. She was strong enough to walk out of the hospital herself and quickly took over the radio in the car while she took in the scenery. She is so happy to be here. If all goes well she will not have to be seen for two weeks at the iwk. Thanks to everyone for all of your prayers and support during this extremely difficult time. Katlyn was in very tough shape but slowly she is getting better everyday. Thank God. Tired right out but so happy!!

Day +166

Day +166 Not a whole lot off change in things lately. We did start a new medication today called Octreotide. This medicate will reduce Katlyns output if she has a secretion problem from the norovirus our something else. It will not help if the problem is a bacteria overgrowth. Because Katlyn is so sensitive and having a problem with antibiotics we thought this would be the safest way to go first. The gi specialist started Katlyn of with a very tiny test dose today just to make sure she doesn't have any problems. It's not standard practice but the way Katlyn has these strange sensitivities we didn't want to create a huge problem. We will start the minimum standard dose tomorrow morning. If she is going to get some results it should be pretty quick as it is fatty acting. We will probably know over three next few days I imagine. The other possibility is that Katlyn may have a bacteria overgrowth. There are two treatment options for this. Probiotics and antibiotics. Probiotics are not even a possibility as Katlyn is immune compromised and they can cause a major problem. Katlyn has an extreme sensitivity to antibiotics, so if need to go that route we will have to do some working around with the dosing. If any of you recall, antibiotics are the primary reason for both hospitalizations. We will cross that bridge when we get there. Hopefully we know more in a few days. It's so frustrating having no idea what is wrong with our baby girl.