Thursday, April 9, 2015
Day +252 Finally things are starting to look up for us. Katlyn had her appointment at the IWK yesterday and by the time we left we felt on top of the world. For starters, Katlyn’s new medication working wonders!! She is able to hold her weight and is now eating a regular diet. This takes so much stress off of us. We have also got news from our insurance that they will be covering this special access medication for Katlyn at 80% which is amazing!! She will need this medication until she can get rid of the norovirus so we are looking long term. Using the fundraised money to pay the copay, we will be able to keep her on this medicine long term. Great news considering we had raised money to pay for a couple of months and Katlyn’s doctor informed us that if it worked she would need it long term. Next, Katlyn’s doctor has reduced some of her medication. This means 5 less pills a day. This is enormous considering she was taking 22 meds daily. This is because she is able to finally absorb some nutrients from her food, so she is not needing as much supplementation. Katlyn’s doctor feels as though Katlyn is getting stronger and more stable. If all goes well we may be able to split the appointments up between the IWK and Fredericton. The plan is to return in two weeks and if she is still this well, the following trip will be local. This means only having to travel 4.5 hours away once a month!! Katlyn had an infusion of iron yesterday which was a huge boost, making her feel incredible. She didn’t want it to end because she said it was making her feel so good. The hopes are to give Katlyn 4-5 infusions to get her levels up and hopefully maybe her iron will level out after that, thus resulting in her hemoglobin also regulating. Katlyn’s labs did look pretty good. Her hemoglobin was about the same as two weeks ago, which means it is not dropping. Also, her platelets are finally in normal range. Now I saved the most exciting news for last. We have been waiting for cell growth, specifically Katlyn’s lymphocyte count to come come up. And even more specifically, her tcells to come. Well Katlyn has always had problems with low lymphocyte counts. Before her transplant she averaged 100, which is very very low. Lymphocytes are the part of your immune system that protect you from and fight viruses. Well last visit her count was a little over 500 but we never got two excited because we’ve seen that before and then drop. Well yesterday we were amazed to find out that Katlyn’s lymphocyte count is 810. Finally!! I could have cried. The doctor was so excited. She said that now we can start to work on some of Katlyn’s post transplant tests like a pulmonary function test and dental. We have not been able to do any of this because Katlyn was too at risk. Now we know we still have a long way to go, but this is the little bit of hope we need to get us through this. The more Lymphocytes that Katlyn has, the more of those can be tcells. Our little girl is growing!! In height, in weight and with a beautiful functioning immune system someday soon. God gets all the credit. He has given us the strength to get through this. A miracle is taking place and Katlyn is going to be well. All the prayers and love and support that has pulled us through this all. I know there will still be bumps and we have to protect Katlyn from germs as she is still very immune compromised, but I am very optimistic. We will get there one day at a time. In the meantime, please continue to pray for Katlyn. God bless.
Day +219 know it's been awhile since I've updated but that is because Katlyn has been feeling a little better each day. With each days come a little more energy to do things and keep us busy. I have also been doing some fundraising to raise money for an important medication for Katlyn. Katlyn's doctor has approval from health Canada to try a drug not commercially available in Canada, but has worked to fight norovirus. Because Katlyn has not tcells to fight norovirus on her own, this is what is causing her so many problems. We did have a check up this week at the IWK. They were very happy with Katlyn's progression. We have been given the green light to try so ng feeds for two weeks, and if all goes well, we will be taking her tube out. She is so excited about this, as the ng tube causes so much fear and anxiety for Katlyn. She does so well tolerating so many invasive procedures, but the ng tube has to be inserted through her nose into her stomach, and she hates it. I cannot say I blame her. Our girl has been put through so much, and everyone has a breaking point. Hopefully good news soon. Also, Katlyn has been receiving sub q injection twice a day and next week we are going to try and take one of the injections away. Since there is no food pumping through her stomach through the night, and her gut gets to actually rest, its possible she might tolerate it. I pray she does. Her poor little arms are so sore, tender and all bruised from the injections. It looks like we will be starting the medication to hopefully fight the norovirus in a couple of weeks. I have told the pharmacy to go ahead and order the first month. The province or insurance are not covering the cost of this medication, but thankfully our great friends and family have pulled through and so far we have almost raised enough for 2 months of medication. Thanks so much for all your support. It is so heartwarming and overwhelming. When Katlyn starts this medication, she will need to be hospitalized at the IWK for some close observation for a few days. Since this is not a drug approved for use in Canada, except for in our special case, they want to document the safety and hopefully the proof it clears the virus. Katlyn's newest chimerism test is still 100%, which is amazing. All of her cells are all donor and keep showing us the same results over and over again. We are still waiting on her slowpoke tcells. These tcells are so important. They will allow Katlyn to live a normal healthy life. Also Katlyn's hemoglobin has been low. Her blood work also shows that her iron is low as well. So she has been put on a high dose of iron supplement to treat her anemia. She has tons of energy even though she probably is quite tired. I think its because in comparison to how she felt before, she is feeling great. I cannot only imagine how amazing she will feel when we get the anemia under control. Please continue to pray for our little girl. She is going to get through all this and be strong and healthy. We need all the support we can get right now. Anyone wanting to donate to Katlyn's medical fund: http://www.gofundme.com/n82m4s
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.