Tuesday, February 17, 2015
Day +198 Happy Valentines everyone. We will be spending the day cuddling and being so grateful we have each other and this little bucket full of love. Are we ever blessed!! She is doing well. Not much has changed. Just waiting for those tcells to come so Katlyn get out of isolation and back on with her life.
So happy to update that we are back home after spending the weekend in the hospital. Katlyn had a fever most of the weekend and a terrible headache and lots of body aches. All of her cultures came back negative so the fever is probably viral. Katlyns fever broke last night. It's really hard to explain what I mean, as I'm unfamiliar with the whole fever thing, but as soon as it was over I knew it was done finally. She woke up this morning feeling great and doing great. Antibiotics were stopped and we were sent home. Yay!!
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.
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 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 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.
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 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 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 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 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.