Tuesday, December 16, 2014
Day +136 So the enzymes do seem to be helping Katlyn, but we are currently trying to find the right dose for her. Over the past few days something seems to be making her nauseous and vomit as well. We noticed that the potassium citrate that she was getting was making her feel very sick. Everytime we gave it, she complained her tummy hurt. So Friday we really pushed for it to either stop or change to something more tolerable. They decided to stop it all together until someone from nephrology came by to look at her. So today the doctor came by and had some very surprised news for us. Since the ultrasound Katlyn had that showed a bunch of stones in her kidneys she has had another ultrasound and mri. Both of these new studies show no kidney stones!! So that yucky stuff she didn't want to drink is gone out of her life, but it did work and dissolve the stones! Great news to stay our day. Also Katlyns feeds are starting to be increased. She needs to be at 70ml/hour to meet her needs and not need the tpn. Currently we are up to 47ml/hour. Hopefully we will go up again by 5ml in about 6 hours. We are also going to work on pushing Katlyn to drink a lot more. Our goal is to get the iv hydration turned down and then nothing. Our hopes is to get everything back to manageable level and one day be able to go home again. Hopefully sooner than later. Last week we also spoke to the doctor about being able to see some of our immediate family. The doctor said he would be comfortable with this as he knows us well and knows we would not have anyone around Katlyn if they were sick. So we will finally be able to see my mom and John's mom and dad and grandmother and then the most exciting part is to finally see Haley, Katlyns sister. It's been forever! ! Lastly, I finally convinced Katlyn to let me cut her hair. It looks so sweet. A fresh new beginning with a fresh new immune system.
Day +132 so the gi team was by today and they have agreed to try to pancreatic enzyme therapy. If it works Katlyn should be feeling great in no time. She should be able to absorb her formula better and then hopefully food. The question about why this is happening is still a mystery but the only thing we can focus on right now is getting our girl feeling better. I pray it works. As for this adorable picture; Katlyn got marker happy. LOL!!!
Day +131 So one of Katlyn tests that was preformed during her last stay has come back showing a malabsorption of fat. We are not really sure what this means yet. The GI specialist should be by tomorrow to weigh in. It might point to the low pancreatic enzyme again. If this is the case I assume that we would start enzyme treatment very soon. This is very frustrating because we just want our girl feeling better now.
Day +129 Katlyn is starting to slowly do a little better again. On Friday we met with infectious disease. The doctor said he was doubtful that Katlyn actually has h flu since she has no symptoms. We did an xray and it was perfectly clear. He thought it was possible that this bacteria may just be part of Katlyns natural flora and came from her mouth rather than her sputum. Immunology agreed and stopped the antibiotics right away. So Katlyn is back to having a gut rest rest, which unfortunately means no food once again. She is getting tpn and ng feedings so all of her nutritional need are being met. She is still very upset though. I can only imagine. I know I am super upset for her too. So on Monday we will do a npa test 48 hours after we stop the antibiotics to see if the bacteria is present further down. This is not a pleasant test and katlyn absolutely hates it. On a good note, we have finally stopped the prednisone and thankfully she has stopped chewing her nails. In celebration we did her nails in jamberry thanks to Jen Biggar for sending her some in the mail. They came at the perfect time! !
So this afternoon Katlyn was really not feeling well. She didn't want to drink or take her medicine. Katlyn works so hard at these things and was just laying around. So anything that was going in was coming out. We decided that we did not want to wait until she got to behind on her fluid and it was best for her to get her antibiotics iv. It was so much work to get her fixed up from the last setback. So here we go again to the IWK. I imagine so long as there are no complications or surprises we will be there about the duration of antibiotics. They are great there and they will take good care of miss Katlyn. On a good note though we got the results of the newest chemerism test and once again it is 100% donor cells. This amazing. Now just to get our girl feeling well again.
Day +125 Katlyns output was very high yesterday due to the antibiotics. Everyone worked so hard yesterday to get Katlyn to drink enough to keep up for the day but it was not easy. Katlyn remained in good spirits even though she doesn`t feel well and couldn`t barely keep anything in. I spoke with the doctor this morning and she was hoping, as we are, for a better day today. If things follow the same suit as yesterday, we will be going back to the IWK. They will give her the antibiotics IV, and probably TPN to give her gut rest and then of course IV fluid. We did discuss the option of extra mural coming in, but it is too difficult to monitor Katlyn close enough that far away. She is in a fragile state, having only had a transplant 125 days ago. I feel as the decision is a wise one. We will insist on Katlyn being checked for Haemophilus influenzae or h flu before discontinuing the antibiotics and sending her home. Its just too risky. We do not want Katlyn to go backwards. When Katlyn was admitted the last time, it was for sure one of the scariest moments of our life. I cannot recall Katlyn ever being that sick. So we are hoping that the day is a better day and things slow down enough to manage.
Day +124 so before we left the iwk they checked Katlyns sputum for bacteria and we found out that it tested positive again for h flu, the same bacteria that she had before her stay at the iwk. We treated this bacteria with three separate antibiotics and its still there. So we started oral antibiotics yesterday. Seems like Katlyns diaherria is out of control again. Hopefully we can keep up on fluid or this calms down, or Katlyn is going to need iv hydration support.
Day +121 so we came back home today. Katlyn is doing pretty good, although she does still have a long ways to go. She gained 7 lbs since we went to the iwk. What a little superstar. So she is now up to 22.9kg. She is still having a lot of difficulty with food though. We tried her today with a few pretzels and unfortunately it was not a good experience. So we will be taking a few days off the good to rest her gut. Her feeding tube will deliver all the required nutrients and calories. It is still very difficult though to say no to her for something as simple as a pretzel. Hopefully after a few days rest, We will be able to reintroduce food back into her life. The Iwk was AMAZING in taking care of our girl and getting her feeling so good. The whole team was amazing especially the immunology team. She now jokes around more and smiles. She wants to play! ! One day at a time we will get our sweet angel better. Tonight we cuddle in my bed and I listen to her sleeping so deeply. So amazing to me since she only wanted to sleep on the couch last time we were home.
Day +119 so the Imodium does seem to be doing the trick but as we increased the formula we began to have a problem again. So last night we were very concerned that Katlyn was losing too much fluid again. We thought maybe the Imodium just needed to upped a tiny bit as her intake has increased so much. It was apparent last night that the doctor on call did not have the ability to adjust Katlyns dose. Which really does not surprise me. You really cannot have too many doctors making decisions about Katlyn. So we asked if they could just lower the formula to an amount that she was tolerating well and hopefully stuff would change a bit. The doctor agreed and also hooked her up to iv fluid for extra hydration where she was -600. Katlyn had some gravol and passed out. This morning seems great so far and things seem to be under control again. They have decided to increase to dose of her Imodium at the same time as putting her formula back up. So we have completely wheened the tpn now and Katlyns liver enzymes are going down which is great. Today Katlyn is getting her ivig infusion as normal. A test a couple of days ago indicates that Katlyns pancreas enzymes are low. Because she has so much output, there is a chance this test was diluted shoo we have repeated the test. We are also doing another more thorough test to see if she is not absorbing fat and studying why. If this is the case then Katlyn will start on some enzyme replacement therapy. We are anxiously awaiting the second test results to see if it is a true reading or not. Time will tell. Lastly Katlyn has a fever today. We are not sure why at this point but we are waiting on direction from her doctor to see what the plan is. Typically we would start antibiotics immediately. Katlyns counts are low so she is at high risk for infection.
So Katlyn has not reached fever again today so hopefully it's nothing. We can never be too careful though and have gathered tons of cultures to be on the safe side. On the positive side of things though, Katlyn is feeling great and her little fire cracker personality is starting to shine through again. We saw a lot of smiles today. Her liver enzymes are coming down a lot!! And her counts are all recovering nicely. She will go for an ultrasound in the morning to look at her pancreas. Some of the preliminary culture stuff should be back by end of day tomorrow.
Day +116 So Katlyn is finally starting to take a turn for the better! ! She is up to 22.5kg which is amazing! ! She us tolerating the feedings well with the Imodium on board. She slept through the whole night last night which was awesome! ! So we had started Katlyn at 10 mls/hour and we are currently at 35 mls/hour. The goal is to get her at 70 mls/hour, by increasing it by 5 mls every 6 hours. By then she should be able to be off the tpn and hopefully as a result her liver enzymes go back down. Besides that we need to work on getting Katlyn to start taking meds that were switched iv, orally again. We are not there yet, but slowly everything will be transitioned over. It's a good day! !
Day +114 So Katlyn has not been tolerating the feedings very well at all. She has not been feeling too well. Yesterday and today both, she woke up feeling extremely sick. So yesterday they turned her feedings down to 10 ml/ hour. She does still get some TPN feeding as well through her IV line, but still its not enough. Yesterday the nutritionist told me that she would be getting 57% of her daily needs. Today however, her liver enzymes were elevated once again, so we had to turn the TPN down again. She will not really be getting a lot of calories at all but hopefully she starts to tolerate the NG tube feedings so that we can turn that up. The idea is that if she can get her needs through tube feeding and her belly can heal, then she can eat in addition to the tube, but she will not have all the pressure and we will not have all the worry. We did meet with the GI specialist yesterday and so far all the results for Katlyn's scope are negative. This is awesome news because it means that so far it looks unlikely that there is another virus or parasite causes more problems. GVHD is also not suspected, which is wicked!!! But it still does leaves the question about what exactly is going on. They suspect that Katlyns gut is irritated probably from the norovirus and it may be that when she had the chemo, it just upset everything more. She was then not absorbing her nutrients properly, and was not able to heal her gut properly. It seems as though everything that Katlyn eats and drinks just goes right through her. Besides the above recommendations, the GI specialist also recommended that we try to slow stuff down a bit, so that hopefully Katlyn can absorb more. I know not everyone was in favor of this idea of making the bowel kind of lazy because of all the meds and stuff going into Katlyn. So through the night Katlyn was awake often, and this morning Katlyn was having a lot of pain in her stomach and feeling nauseous. She was even sick. So we really really pushed the Imodium to start right away. We started it this afternoon and we hope that it works. I think that if it works it won't make Katlyn's bowel too slow. I think it hopefully will operate a more normal speed. I'm praying anyway. She seems like she is in a better mood now. She is not in pain or discomfort, after having a long gravol induced nap.
Day +112 So a little good news today. TPN can be hard on the liver and because Katlyn gets 20 hours of feedings a day and her liver enzymes are elevated. So we will be cutting back on the tpn. At first they were going to allow Katlyn to be on a digestive soft diet to make up the difference, but then decided that they would put a feeding tube in. She did manage to get some pretzels and a pancake in before they made this decision. So the feedings will be super easy on Katlyns gut and allow her to get all of the nutrients that she needs. The great thing about this is that so long as everything goes well and she can tolerate the feedings well, we should be able to manage this from home. After a few days of just the feeding tube they may slowly reintroduce food again to her. I think this will be a safe way to manage her problem with her gut. This will allow her to get stronger without putting too much stress on her stomach or her. With regards to the scope it does not seem as though they can say exactly what is going on. They have said it doesn't look like gvhd which is great. All the tests seems to come yoo with nothing which is great. So we are thinking it is the norovirus and the fact that the balance was upset when she had her transplant (maybe the chemo). Because she cannot absorb nutrients properly, it seems as though she cannot heal her damaged gut and it just keeps getting worse. She was in very upset by all of this especially where they gave food back only to take it away again. We just don't ever want to see her in the state she was in. Hopefully this works and we can start working on a plan to take her safely home.
Thursday, November 20, 2014
Day +110 Not many changes today. Katlyn continues to do well. She is trying her best to keep busy and pass the time. It's really hard for her not to think about food. She is so hungry. She had a peripheral iv placed on Friday and it was removed today, so instead of her having two separate lines, everything will be going through her port. This makes me so happy because I hate peripheral ivs. No news about anything from the scope and biopsies yet. Hopefully no news is good news. We are just so focused on the day to day and Katlyn feeling better. Her nausea and belly pain seem to be down, but in the last few days she has been having terrible migraines. They are nasty too. Tylenol does not seem to do much and morphine has been used most times. Today the morphine doesn't seem to be doing much. This picture is Katlyn learning to cross stitch. She picked it up very easily and seems to enjoy it. I also wanted to mention that I do have a group on facebook set up for Katlyn. Its called prayers for Katlyn.
Day +109 still no word back on any results from the scope yet. Katlyn is doing so good though. She is super smiley most of the time, except for moments when she gets frustrated with not being able to eat. Right now I am allowed to give her some chicken broth, and a little bit of jello, a couple crackers or pretzels. Let's just say, she has been chewing a ton of dessert gum. Her output is way down now. This is very good because by giving her gut a break we are actually getting a direct positive result. She is also currently on antibiotics which will discontinued soon, so hopefully that helps too. I think that it will be a slow process when we do start to give food again. I imagine we will slowly introduce stuff that is easy on the gut. Katlyn is doing her best to keep busy but its hard. She does get a little stir crazy now and again. We are extremely grateful to our friends Jennifer Cox and Mark Cox for making us some delicious food and showing us so much support. They were so kind to bring Katlyn some stuff to do and a ton of movies to watch. We spent a lot of time with this family in the hospital when Katlyn was a baby as their son was diagnosed with SCID as well.
Day + 108 Katlyn seems to be doing okay. Her bloodwork is starting to stabilize with the tpn and extra fluids she is getting. It is so difficult to try and explain to her why she cannot eat. She gets everything that she needs through iv and they are trying to give her gut a rest to see if maybe the break and proper nutrition helps. However, for an 8 year old it just doesn't make sense. She loves eating and thinks this is torture. I imagine it is too. Poor girl. Hopefully we get answers soon and this doesn't have to go on for long.
Day +106 So we still do not have a lot of answers about what is going on, although I believe we are getting close. They do have Katlyn re-hydrated now and she will start getting total parenteral nutrition or TPN. It looks as though Katlyn is not absorbing much from her food from whatever is going on so the TPN will allow them to give Katlyn all the nutrients, electrolytes and proteins that she needs. A feeding tube would not work for Katlyn because all the feeding would still go to the gut where there is a problem. This type of feeding bypasses the gut and goes right through her veins. This will take pressure off her too when she is not feeling good. She will get proper nutrition and she won't have to worry. We won't have to worry. She really does not have any more room to lose weight. They are also going to try and give her as many of her medications through IV as well. Yesterday Katlyn was prepping for a scope so she was unable to eat all day. This was so difficult but she did very well. She was wait listed for the procedure today so we really had no idea what time of the day she would be going. The nurse guessed it would probably be the afternoon. She did get called to go late this morning which was great so that she didn't have to wait any longer to eat and drink. The procedure itself seemed to go well, but we still have not got any information for us. We will wait. I imagine they will be able to at least tell us what they saw soon, but they did take a lot of biopsies and of course those will take time. Of all the procedures that Katlyn has ever had, I think I was most scared for this one, even though she had it before. She is in such a fragile state that it really make me nervous. She was eating pretzels and talking away about what she remembered before the procedure and them putting her to sleep, not very long after she woke up. What a little trooper. So here we are. They do tons of tests and blood work often and lots of specialist keep coming to see Katlyn. Everyone is trying to piece together what is going on. One thing that we do know for sure is that Katlyn's kidneys are full of kidney stones. So they are giving her potassium citrate to help break those up. This may be the reason for the blood last friday. I'm not really sure how long Katlyn will be hospitalized but right now I just don't care. I need them to make her healthy again. She is slowly brightening up, but I know she still has a long way to go.
So the gi specialist stopped by to let us know that katlyns small intestine and large bowel do look enflamed. They looked definitely bothered but benign. We need to wait until next week to see if the gut tests positive for a virus or anything. Hopefully it does not. One theory from her doctor is that it may be that Katlyn is not absorbing the proper nutrients to support her including healing her gut, and so we got this flare up out of control and her body doesn't even have what it need to try and heal. So with that being said, hopefully as she gets more nutrition and less irritants the gut heals and stabilizes. The hemotologist said that the situation doesnt look like gvhd to him but we will know more when the study is back. Katlyn is going to start to get most meds iv as well and some of the meds are not compatible, so unfortunately she has to get a peripheral iv placed. She is in good spirits though. She is such a trooper.
Day +104 Well it has been an extremely long and tiring day. So many tests and so many specialists. Everyone trying to answer the puzzle of what is wrong with our little girl. She did have a consult with GI and it looks like they are wanting to do a scope maybe friday to see what is going on. It can be a number of things going on including the norovirus, another virus, meds or gvhd. The night was so so long and stressful. She had moments of huge fluid loss (like over a litre) and then she would have chills. This terrified me. Her poor little body was just trembling and her teeth chattering. Each time I asked the nurse to come check on her and each time all of her vitals were fine. They did decide to stop the bicarbonate infusion for now and her blood did continue to normalize. It's still acidity but hopefully it neutralizes soon. Also her electrolytes, white blood cell count and platelets seem to be stable. Her hemaglobin was dropping but seem to be leveling out. Her coaligation has dropped since recieving the vitamin k supplement, so is possible that may have been caused by her being malnourished. I know we are in the right place but I am so sad that she has to go through this. Katlyn has been through so much. I know this is just a bump in the road and we will get to the bottom of this but it still sucks. My heart really aches for her. We try to look at the positives but it's so hard when you look at her and see her not feeling well. She was in good spirits most of the day. Also we have noticed she is coughing less today. Hoping for a restful night and hopefully an even better days tomorrow.
So the resident doctor came in for a chat about Katlyn. She was surprised that Katlyn seemed to be feeling a little better because her bloodwork is getting worse. Her blood has become acidotic. This happens for many reasons, but in Katlyns case it's probably due to extreme dehydration. She is just losing so much. So we will be starting to infuse bicarbonate to to try and neutralize Katlyns blood. Once we start we will recheck her blood in four hours to see if there is an improvement. On the plus side though all her other electrolytes seems to be normalized with the extra iv support. She is back to sassing the nurses and giving her mother and father a hard time. LOL!! I love her little smile so much. Despite a hard day, we have shared some good laughs.
Day +103 So we just met with Katlyns woderful doctor. He agrees that there is definetly something going on with Katlyn. He is going to order her some vitamin K as he suspects that Katlyn is not absorbing nutrients properly and she has become malnurished. We suspect that the norovirus is the culprit., Katlyn tries so hard to eat well and the constant belly pain, nausea and weight loss are definitely disconcerning. Sh is in the right place though. I hate that she is in the hospital, but I feel great relief knowing they will get to the bottom of this and she will be okay. By the time we go here yesterday evening it was obvious to us that she had become very dehydrated. Usually Katlyn loses a lot of fluid anyway because of the norovirus, but she started antibiotics on Saturday, and she is losing way too much fluid. There is no way she can eep up with this. I can see by looking at her input and output that she needs to be supported by iv hydration for sure. Words cannot even come close to expressing how scared I am right now. I have been trying to stay focused on all of the positive but it is so hard when she feels so unwell. We have had so many sleepless nights lately worried about her.. I just want our baby girl to feel better. I trust the team here. I know they will take good care of her.
Day +102 Katlyn did remain stable through the weekend but it has become apparent to us and the doctors that something is wrong and she needs to be looked at by the team at the iwk. For starters there is something going on either with her kidneys or bladder and we need to get to the bottom of that. She does seem quite a bit better in regards to that. She no longer has abdominal pain but there is still blood present. Secondly we have been working very hard to maintain Katlyns weight and I honestly feel as though she does eat well. There may be something else going on. Some of the bloodwork suggested she may have a vitamin k deficiency which would mean she is not absorbing fat. I know they will get to the bottom of it. She has dropped down to 19.5 kg and there is just nothing left for her to lose. This terrifies us. Johnathan and I havent hardly been sleeping and its so hard to mask the worry with a smile for Katlyn. I have no idea how long she will be in the hospital but I feel relief knowing they are going to look after her. She is wasting away on us. I know that she should start feeling better but she has little interest in doing anything because of all the nausea. I doubt we will know much today but hopefully we will know a little tomorrow.
Day +100 so we spent the day in the hospital today with Katlyn. The local pediatrician called too check on Katlyn. He asked how her urine was and I told him that it may be a little better but still red. I also then let him know that Katlyn was having left hand abdominal pain. He asked us to bring her in for some repeat bloodwork and an ultrasound. So off we went. When we got there they were ready to admit Katlyn but I explained that we would have to wait and see all the test results and discuss things with her primary physicians. A hospital stay would have to be in Halifax I imagine. When it comes to Katlyns care we always need to error on the side of caution that why we didn't hesitate to bring her straight to the hospital when we had a lot of concern ourselves. You just don't want too many cooks in the kitchen. So all the tests were about the same or a little improved. Basically not saying much about what is going on with Katlyn. We have ruled a lot of things out but the worry remains.
Day +99 so we just got home from spending the afternoon at the hospital in fredericton. Katlyn was peeing blood which is super scary. The doctors first suspicion was her platelets so we were prepared for her needing a transfusion but to our surprise the platelets were higher then they were on Wednesday. They are still not in the normal level , but they are coming up, which is encouraging. So next we looked at liver function and got a urine culture and checked katlyns coagulation, which is the process of blood clotting. Katlyns number does indicate that she will bleed easily. Also her vitamin k was low, which I'm scared means that she is not absorbing fat but it would explain why she keeps losing weight even though she eats. Also Katlyn did test positive for bacteria in her throat, from a sample that was taken on Wednesday. So we have started her on antibiotics and have been given direction to bring her home and keep our eye on her. If She starts bleeding from somewhere else (and this really scares me) to bring her back. Otherwise we are told to bring her in on Monday for repeat bloodwork. Meanwhile the culture might grow and show an infection. Katlyn gets lots of fluid so it's unlikely that, but it may be an infection, gvhd, medication or something else. We need prayers! !
Day +98 Katlyn had an appointment at the IWK yesterday and most things were about the same or even better. It really is amazing where you think about her progresss from week to week. This time the doctor was lucky enough to see Katlyn smile. The past two weeks have been a little hard. We were heading in the right direction, but had a few days backwards and those days were pretty scary. Katlyn hates taking liquid medicine, so we changed her zantac from the liquid to the pill form, but in order to do so we had to go up or down on dose. We went down on dose, which seemed to be going pretty good. However we also needed to change her MMF to liquid suspension. Almost immediatley Katlyn became very ill. She always has problems with her belly. She is always nauseous, but for a few days she seemed worse. She didn't want to eat or drink anything. We still pushed her very hard, but I literally had to sit with her all day long pushing her. We felt so bad for her. It was pretty scary for us because we didn't know what was going on. So I was sitting here thinking it all over. What has changed over the past few days? What has changed in the past couple of weeks? I dawned on me that when we switched Katlyn's tacrolimus to liquid suspension, I can remember her having this awful chest pain immediatley and the zantac is what ended up relieving that pain. So I decided to go back to the liquid zantac, and upping the dose. Well, that night Katlyn woke up in the middle of the night and snuck in the refrigerator. LOL!!! She had a pickle and half a juicebox. The next morning I was overjoyed to see her little smile and sense of humor back, I don't know for sure if that was what the problem was, but it seemed to work!!! So yesterday speaking with her doctor, we upped the zantac even more to keep it in pill form, but hopefully the higher dose is just more protection for her little belly. Another problem we are having is that Katlyn keeps losing weight. She does have an appetite and she is eating well, but the norovirus is taking its toll on her and we supsect she is not absorbing nutrients from her food like she should be. So we will be trying a couple of new things. Its very tricky to give Katlyn something for her belly because we don\t want it to interfer with the absorption of her medications, or making her bowels lazy. This could result in keeping the norovirus in, or anything else bad in for that matter. So we will be trying Kaopectate to offer her some releif and simethicone as a second or primary source. I\m going to play around with the dosing a bit and see if we cannot find a way to make our girl more comfort. The Kaopectate will coat the gut, so hopefully Katlyn will absorb her nutrients better as the gut heals a bit. gvhd of the gut is not suspected at this time. We did have a flare up of skin gvhd as I mentioned in my last update, but it cleared up nicely with the steroid cream. So this week we will start to wheen her prednisone again. This is such a slow process. She had started at 50 mg daily and now we are down to 20 mg. We go down 5 mg/ week, so it is a long process. This medication was very effective for fighting the gvhd, but it comes with some nasty side effects. It makes her very nervous and stressed out. This poor girl almost has no fingernails left. We will also start to wheen her mmf, which is so exciting. the immune supression drugs are very hard on her little body. Wheening both of these drugs are a little risky because either can cause a flare up of gvhd, but we will watching Katlyn very closely. By December she should be done with MMF, and then in February we should start to wheen the tacrolimus. As you wheen these two medications, her immune system will slowly be turned on. Katlyn does still have Rhinovirus as well. Its hard on her, and its now been at least a month of being sick with it. However her lungs are clear. She is coughing a lot and of course the runny nose, but we are managing her symptoms well. Katlyn's platelets were up a little bit this time, which was a releif. She is still not in the normal range, but hopefully she will be soon. She is not at a dangerous level either. Katlyn's ESR was elevated this time, and its unclear exactly why. The only problem area seems to be her gut. The doctor doesn't think its gvhd, but the norovirus. Again, we will be watching this very closely as well. I\m thinking, it may be possible that those few days that she was really unwell may be the cause. I really don't know, but maybe the gut was super irritated with the extra medication and less protection. We will see. So Katlyn will have her IVIG next week in Fredericton, and the following week in Halifax. She will also get her pentamidine in two weeks. The doctor mentioned we might try the septra again at some point, and I explained that I reached out to other parents with Katlyn's condition, and it seems as though many have the same sensitivity. After these two appointments we will then go to visiting the IWK every two weeks. Her IVIG infusions will go from weekly to monthly. All of this is great news!! So hopefully we keep heading in the right direction and Katlyn is able to fight this norovirus and rhinovirus. Hopefully by wheening these drugs the reverse effects lessen and she starts getting some relief. I pray that the medication we are trying for her belly works well and that hopefully she stops losing weight. Please continue to keep our sweet angel in your thoughts and prayers.
Monday, October 27, 2014
Day +88 Talk about a stressful day. So last night We noticed a rash on Katlyn's arms. It looked all too familiar. Katlyn absolutely hates when we put cream on her at all, but we fought with her to put some steroid cream on. I could tel just looking at the rash, it was a serious matter. So we took pictures and put the cream on and went to bed. So neither Johnathan or I barely slept all night because of this rash. The worry was real. This morning when I woke up the rash was still there but actually had improved. I immedietly sent the doctor a message letter her know about the rash and comparison pictures from last night and this morning. Then I paced the floor. Johnathan was at work at the time. I kept checking Katlyns temperature, and although she never reached 38 I kept checking. It was pretty warm in here, and her temperature was warmer than normal. She had the usual "not feeling good" look as usual. I felt sick. I knew I should be taking a shower because I was almost sure we would be headed to the hospital. I could not leave Katlyn though. I was way too worried. I waited exactly an hour and then called the doctor. She said she was pretty certain it was gvhd and that we could continue to put the stteroid cream on the rash and we would reassess tomorrow. Depending on the rash we may increase her prednisone. We definelty will not decrease the prednisone this week. We knew that this could happen. When weening prednisone, it is possible to have a flare up again. So far though, it seems to be getting much better today. Besides that, we need to change the dosage of one of Katlyn's medications as her level is too low. This medication is available in 250 mg capsules, and 500 mg tablets. With Katlyn's new dose we cannot use either of these. It will have to be liquid formulation. So this morning I was trying to figure out how we were going to get this liquid formulation. Sometimes you have to get medication compounded and with anti rejection drugs, they have to be done under a special hood so that the pharmacist is not inhaling the medication. In our area there are two pharmacies that have access to a hood. The first pharmacy said it would take them about a week to make the medication, which we needed two days ago and the second pharmacy said they were waiting to hear from the IWK about the recipe. Me being me, I couldn't wait, so I called the pharmacy myself asked if they could contact the pharmacy for me so we could get this done quickly. I'm not sure why anyone thought that this drug had to be compouded, as the IWK informed me that there was a commercially available liquid form. Well that solved a lot of problems. So our local pharmacy will be stocking this medication for Katlyn and I will be able to get it tomorrow. But then came my next problem. The pharmacy advised us that there was a problem with the billing. Basically it was just a technicality and needed some special authorizaton, but I was so relieved to learn that it has been approved. Anti rejection medications are not cheap. I knew it would be covered, but I still cannot help but stress. Meanwhile Katlyn's doctor sends me outstanding news that once again her chemerism test is 100 % donor cells. This is awesome!!!!!!!!!!! She is eating and drinking well and we are blessed with her little smile more and more. God is good. Please continue to keep Katlyn in your prayers. She does still have that terrible virus causing her to cough a lot and then the norovirus. We need this rash to be resolved quickly. And then we need for her platelets to also come up also (we will be rechecking that on wednesday.
Day +84 it's been a long couple of days for Katlyn as today was her appointment in Halifax. Everything went pretty well. As I mentioned before, Katlyns liver enzymes had been elevated and there was concern that this could be a virus, the septra or gvhd. Well last week the number did come down and again this week down again. I got to be honest though, a lot of me was still scared and trying to prepare myself for the possibility of a hospital stay. So it appears as though the septra was probably the culprit for this. So no more septra for Katlyn for awhile. Instead she had to have an inhalation of Pentamidine to protect her from pcp pneumonia. The septra protects Katlyn from more than just the pcp pneumonia, but right now it's causing her too much harm. This is the second time Katlyn has the inhalation and she did amazing. Last time she was very upset, freaking out and crying. This time she worked very hard to get it inhaled through all the coughing. Katlyn does still has a runny nose and cough, so the doctor thought it was a good idea to check her lungs with xray and they are clear! ! Katlyns platelets have been dropping with the last two bloodwork checks. It's hard to know why, but the hemotologist does not think it is gvhd. It could be the norovirus or this new virus Katlyn has. It could be that for whatever reason she is losing them at a rate that she cannot replace fast enough. It could be the septra or another medicine she is on. I'm going to quietly point my finger at septra and hope they recover quickly since the septra has been taken away. I stop dropping so that katlyn is not in danger. Also the last visit we had at the iwk, Katlyn started to take phosphorus, which she did not tolerate well. I asked the doctor if we could push milk and she agreed it would be better. Well for the second week in a row this value is up! ! I have be making sure Katlyn gets a minimum of 750 mls of milk each day and although her number is still a little low, it's much better! !! Katlyns ivig dosage has been cut in half as well, as her trough level was pretty high, probably because she is not losing as many of the immunoglobulins due to the norovirus. This weeks appointment really put in perspective how far Katlyn has come. She smiled much more today, and hooked around with the nurses and doctors. Her little body is staring to heal and it is evident in her hair starting to grow back and how she had interest in eating again. Our little amazing girl is starting to feel a little like get old self again. It's amazing. We still have a long way to go and a lot of work amd patience still. One day at a time we will get there. We need lots of prayers that Katlyn can beat these two viruses (norovirus and this awful cough/runny nose), that her platelets recover quickly, that all her counts continue to improve, that she starts to gain some weight on her little body and gets stronger and stronger. And Lord give me the strength and the patience to take care of Katlyn and overcome her stubbornness to ensure that all of the things we can control are done to keep her healthy and safe.
Friday, October 17, 2014
Day +78 I know it has been awhile since I have updated any progress on Katlyn. Its because it is a lot of work taking care of her, and I barely have time to do much extra. It's getting better though as Katlyn is also starting to feel much better. Up until a few days ago, Katlyn didn't even have enough energy to get off the couch. Her days were spent taking her meds and trying to eat through all the nausea. She has a virus right now with runny nose, sore throat and a cough, but I can tell she is already starting to feel better. I imagine she must have picked it up at one of the hospitals because we have not been anywhere except the hospital with her, and she had the runny nose before we even brought her home. On the plus side though her pediatric immunologist at the IWK said she already had a few T-lymphocytes on flow cytometry. This is amazing news!!! So hopefully Katlyn's new immune system can take care of this one on its own slowly. It really blows me away how far she has come. She is now wanting to get around more. She doesn't have any interest in sitting on the couch at all. She is starting to joke and laugh again. I can also tell that the effect of the steroid is starting wear off too, as the aggression and nervousness is also going away. She had been super dizzy last weekend, which was a huge scare for us. That also seems to have gotten better. She wanted to decorate for Halloween a couple of nights ago, and we made roll out sugar cookies. Last night we carved our first pumpkin of the year. My heart just melts when I see her coming back. For instance when we were carving the pumpkin, she was laughing and having a time while putting pumpkin guts on my arm. She would also randomly just look up at me and tell me that she loves me. This really is the hardest thing I have ever done in my whole life. To have to watch her in so much pain and discomfort. Watch her struggle the way she has had to. This is not easy for her. I am starting to see the light though. Her little smile tells me we are getting closer. She told me a couple of nights ago that she was so happy because she felt accomplished an fulfilled. On the bloodwork side of things this continue to look pretty good. There was a question last week as her liver enzymes had become really elevated. They thought it may be a virus, her septra or gvhd. If it was gvhd, we need to prepare to stay in the hospital with her. So we stopped the septra and she never had any this week. Her liver enzymes came down quite a bit on Wednesday, and it looks like the culprit is the septra. Her platelets and hemoglobin and white blood cells also have come down, not to a scary level, but septra is also suspected. Septra protects Katlyn from PCP pneumonia as well as some other bacteria infections. She will not be able to have it though, and instead she will have Pentamidin inhalation instead. This is only given monthly which is nice, but it only protects her from the PCP pneumonia. I ask for your continued thoughts and prayers for Katlyn. God has been good. The support we have received is amazing. It really has been our backbone through all of this. Thank you.
Day +66 Katlyn is doing very well being at home. She seems to come around a little more each day. If I think back to when we first came home from Montreal or even sooner, just last week, it amazes me how different she is. She is eating better, having less nausea and more interest in doing things. The steroids that she is on have really compounded things. They have been amazing at working to keep the gvhd away, which is a blessing. However, they do have a lot of side effects. They make her very nervous and very upset and frustrated. Each week the medicine is lowered a tiny bit and in turn the side effects are a little less too. It is great having her home though!! Amazing!! She has a lot if medication but we have already established a routine and it's working well. This week we head to Halifax and I'm pretty excited for them to see how well she is doing.
Thursday, September 25, 2014
Day +55 we have been discharged from the IWK. Katlyn is doing extremely well for starters. And because of how careful we are with keeping her safe we have been allowed to go home and isolate her at home. She is not permitted to have any visitors at all until she is at least +100 days. This is incredible! ! Katlyns primary physicians at the IWK are extremely careful so to let her go home is quite reassuring.
Day +53 Katlyn is doing extremely well. Her rash is almost gone completely now and she has been feeling pretty good. She was discharged from Saint Justines on Thursday and we were blessed enough to be able to spend the weekend at home!! It was amazing but extremely hard to leave. Katlyn spent a lot of time sleeping but she looks much healthier than when we first got her home. Each day she slept until noon, with wakeups for medicine. She also spent hours each day in the bathtub. So now marks the next chapter in this journey. We arrived at the IWK today. It's unclear how long Katlyn will spend here, but we just want to make sure we do what's best for Katlyn.
Monday, September 15, 2014
So this morning when Katlyn's neutrophils reached 6000, I was a little nervous. There I was standing at the nurses station questioning the jump. I mean, to me it was unbelievable. And then to my amazement the nurses started to sing and clap along to this song. This might be my favorite song now. The nurses at Saint Justines are amazing!!!
Day +45 Katlyn is doing amazing. She has been in great spirits and tries very very hard everyday to get stronger. We barely have to say much about the drinking. We just have to bring it to her and she has no problem drinking between 2.5-3 litres a day. Her magnesium level is starting to come up a bit, which is great news since we give Katlyn 750 mg of magnesium a day, and its very rough on her stomach. We are working on her sodium as well. Since she is drinking so much, she flushes too much salt so we have been putting extra salt on everything we can. Today Katlyn's neutrophils are at 6000! Which is incredible. This number really took us by surprise. Wow! Her platelets remain stable but her hemoglobin continues to fall. So far she has only needed 2 transfusions, but she is close to needing one again. The gvh rash seems to be under control. In addition to the cream we started her on prednisone orally and it seems to be doing the trick. We have been taking Katlyn outside for little outings as often as she will let us. She tires easily, but today I am bribing her with a Klondike chocolate chip ice cream sandwich.
Day +43 Katlyn seems to be a little more like her old self everyday. She is joking more and laughing more. Her little body is very tired because she has been through a lot, but she is a little firecracker. Katlyns counts and everything is going well. She is starting to eat like a champ again and she seems to drink 2.5 litres with little difficulty. Her new immune system seems to be functioning, and because of its foreign surrounding it has caused a little graft versus host disease or gvhd. This is where the new immune system is trying to fight against Katlyn. She developed a stage 1 gvh skin rash on Wednesday. We started to apply some cream to it yesterday and hopefully it starts to get better soon. There are no signs that the gvhd is anywhere else, and I pray to God this resolves quickly and we never have to deal with gvhd again. Please continue to pray.
Day +39 So I am going to start this post of with the best news of the day!!! Katlyn's chimerism results indicate that her cells are 100% donor. This is amazing. This is confirmation that Katlyn has successfully engrafted. Wow. what a great day. In other news Katlyn was disconnected from IV hydration yesterday morning and she is still off. Yesterday she drank more that 2.5 litres for the day. What a little champ. Her sodium is a little low so we have been putting extra salt everywhere to make up for it. As you flush your body, you also flush sodium which is not good. She is low but just below the normal level. Her magnesium also is a little low, so she will start to take magnesium supplements three times a day instead of two. She is doing amazing!! What a great day.
Day +37 Katlyn seems happy and very well today. She is smiling and eating and drinking with no pressure. The test to see if she is hydrated enough is usually preformed first thing in the morning after Katlyn hasn't drank all night, so this may not be a true reading. The doctor is ordering one to be done in the am and another in the afternoon to see if it makes a difference. Meanwhile our goal is to get Katlyn to drink 2.5 litres. She is able to come and go today from hospital until 8pm so we are going to take her for a drive for a bit to get away from the hospital.
Day +36 Katlyn is doing very well medically. Everything is going in the right direction. At this point the only thing that is holding her in the hospital is the hydration. It is so important for her to drink so much because of all the medications she is on. If her kidneys are not properly flushed than it can cause kidney damage.
Day + 32 So Katlyn is starting to come around again. She is not longer dehydrated but she is still hooked up to her IV. She continues to drink like a champ. Its not the fact that she wasn't drinking enough that made her dehydrated. It's because the terrible nausea made her vomit and she lost too much fluid and wasn't able to catch up. However, the nausea seems to have stopped bothering her as much. We just need to give Katlyn some Zofran regularly, but she isn't really needing anything else. Whereas before, we couldn't give her enough. On Friday night and Saturday morning we had decided to try Ativan to see if it would help Katlyn with the nausea. She had a terrible reaction to the medicine. It caused her to feel quite depressed. So after a day of crying and feeling terrible, she was pretty tuckered out. No more Ativan for Katlyn ever!!! Her weight is starting come back up, which is great. She has lost quite a bit of weight. We expected this, but its nice to see her asking for food again, rather than having to pressure her to eat. She actual woke up around 4:30 am today and asked me I she could have a snack. Of course I quickly got her her snack and she went back to bed. Today her neutrophils are at 800. They do fluctuate, which we are all too familiar with. However, they have not gone below 500. Katlyn's platelets are pretty stable now, but today her hemoglobin is low and she is going to need a transfusion. Katlyn is doing extremely well. She might not go home as soon as we initially thought, but she will go home when it is time for her to go home, and it is safe. Thank you all for your continued positive thoughts and prayers.
Day +30 I hate to post any bad news but Katlyn needs prayers. She is dehydrated today and had to be hooked up to iv. She has a lot of nausea and it's interfering with her being able to eat properly and now, because of vomiting yesterday, she is dehydrated. Please pray.
Friday, August 29, 2014
Day +29 So much great news to report today. Kaltyns neutrophils are at 900 today which means that she has been above 500 long enough to no longer be neutrophenic and we can finally ditch the gowns and masks. Yup that's right. We've been able to give our girl some real smooches today. The doctor was telling Katlyn this morning that he was very proud and impressed with all of her hard work. She has been going outside for short trips, although she does wear a mask because there is construction in the area and we don't want her to get a fungal infection. Over the last couple of days they have started to give Katlyn magnesium by mouth and reduced her hydration, so that she no longer has to be hooked up by IV. So there is no more lugging her pole around except for her IVIG infusions which are a few hours once a week. Next week, as long as Katlyn's neutrophils are to 1000, they are going to perform a test called chimerism. This blood test will tell us how many of those beautiful cells are donor cells. We hope and pray for 100% donor cells. This would confirm engraftment and so far a successful transplant. They have also switched cyclosporin for tacrolimus. This is great news for Katlyn because the cyclosporine was 9 pills in the am and 9 in the pm. With this new med, so far it's 2 tiny pills in the am and two in the pm. So with all the being said, if Katlyn progress keeps in this same direction, it looks like we will be headed home soon. Potentially as early as next week. We will have many precautions to keep Katlyn safe, but she will be in the comfort of her own home. She will eat and sleep better and I just know she will be happier there. She will have many followup appointments at both at the IWK and the DECH. She has an amazing team of doctors that have brought her this far, and I just know she is going to be in good hands. Thank you all for your continued prayers and support!!!
Tuesday, August 26, 2014
Day +26 I honestly cannot even imagine being happier than I am right now. Funny thing is, as Katlyn's cells grow we are just going to be happier and happier. Katlyn got woken up this morning very early because they need her to take her MMF every 8 hours for some bloodwork to make sure she is getting proper dosage for her immune suppressants. Waking Katlyn up so early was kind of harsh for a little girl who is so tired, but the nurse decided to soften the blow by showing us Katlyn's bloodwork. She has already reached 700 neutrophils and 200 lymphocytes. We immediately called dad. Her platelets are now in the normal range as well, and we are just waiting for the hemoglobin to come up too (it will). So one more day of neutrophils and we can ditch the gowns, and masks!! I will be able to finally give my babes a kiss again. They are also removing the rest of Katlyn's hydration today . This means that she will only have one line giving her magnesium. She no longer has any medications running through it either. Very soon she will not need to be hooked up at all!! Her magnesium levels are low, but not danger low. They are trying to maintain a good level with a drug that holds the magnesium in Katlyn's body longer. They could just give her magnesium by mouth, but it causes diarrhea Because Katlyn has norovirus and problems already, we don't want to make that situation worse. Eventually Katlyn's lymphocytes will be able to fight off the norovirus, but not yet. With immune suppressants we will, in about 5 more months time, slowly turn her immune system on. Right now we are suppressing it so that it can adapt to its new environment and protect Katlyn, rather than fight against her. This immune suppressant is used to prevent graft versus host disease or gvhd. Today is a great day!! Thanks so much to everyone for your continued prayers and support. Keep it coming!!!!
Saturday, August 23, 2014
Day +23 is a great day!! Katlyn woke up this morning feeling sleepy, but not nauseous. She quickly got some breakfast in and then proceeded to take 12 pills. She barely complained about taking them at all. She had a morning snack and lunch was a success. Her tastes buds are back so things are starting to be delicious again. Nothing sweeter for us right now than hearing our baby girl say "I'm hungry" or "I feel great." You can see it. There is more life to her and she is all smiley. What a blessing!!! She has hardly said much about her stomach today, so here's hoping the nausea is going away. The doctor has continued to take her off the IV meds and starting tomorrow we will start to pull back the hydration. Johnathan had a great idea to have the nurse write down all of Katlyn's meds and try to rearrange some to make it easier for Katlyn. Cyclosporin alone is 8 pills and MMF is another 2. These two pills have to be taken at then same times everyday and are super important in preventing gvhd. So here we are trying to get 12 pills into her and then she has her regular pills as well. We looked at what she has and shuffled it around a bit so that she can focus on just those and the other meds are throughout the day. Trust me when I say, she is one full girl after 12 pills. Also, Katlyn has been taking allegra for quite awhile not because she was breaking out in hives all of the time for some unknown reason. The allegra prevented Katlyn from breaking out in hives at all. We asked the doctor if we could try taking this away since she has done so well for so long, and we are in a safe place to do this. He agreed that is would be a good idea. Any allergies that Katlyn used to have may be different now anyway since she has a brand new immune system. Speaking of her immune stem. All is looking great. Every morning is so exciting for us. If the numbers stay the same than its just confirmation that all is well, and if anything goes up then it CHRISTMAS!!! Her neutrophils today were 200, lymphocytes 100, and the platelets and hemoglobin continue to go up. It's amazing. We are so pleased with how well Katlyn is doing.
Thursday, August 21, 2014
Day +21 I got to say that Katlyn is doing amazing!! A true blessing. Today her neutrophils are 300. Her white blood cells continue to double each day, her hemoglobin and platelets appear to be rising on their own. Things are progressing a lot faster than Johnathan or I ever imagined they would. Each morning is exciting to see her cells at the same count or going up. As I mentioned before, once her neutrophils reach 500 she will be a little more safe and feeling a lot better. Neutrophenia leaves Katlyn very susceptible to bacteria infection. Its so amazing because Katlyn had so much difficulty reaching 500 before, and here were are just a little closer everyday. With Katlyn's platelets being to a safer level today we have asked the nurse to get in touch with the message therapist and ask if they can come visit. The art therapist is finally back from vacation as spent sometime with Katlyn yesterday. The music therapist will be back next week. The nausea continues to be a problem for Katlyn and trying to get her to eat is a constant fight. This morning I even made her some cinnamon buns and to my surprise she still doesn't want to eat. On the plus side though we are starting to take all the IV drugs away and starting to introduce everything by pill. Cyclosporin is already a success with 8 pills in the morning and 8 at night. Today we will be switching MMF, another med to prevent gvhd. This pill will be 3 times a day. There are a few more meds and vitamins she has been getting by pill as well, but after today the only med that will remain by IV zantac. Then we will slowly reduce the amount of hydration by IV and increase by mouth. Because the cyclosporin is toxic to the kidneys it will be important for Katlyn to drink 2.5 liters of fluid a day. I cannot even believe we are to this point already. Aside from the nausea Katlyn is doing perfect!!! Thank you all for your continued prayers and support. It is greatly appreciated!!!
Day +19 So this morning we gave Katlyn gravol a couple of hours before she woke up. She was less nauseous when she woke up. We also gave her zofran 30 mins before each meal. She did eat a little today but it was a lot of work. We also started a new drug called maxeran. This drug is usually the third level they go to when the others fail, but gravol doesn't work for Katlyn as it helps nausea but she passes out. We started this new drug this evening and it seems to be working pretty good.
Monday, August 18, 2014
Day +18 well I'm not really sure if I should get exited yet or not because it just seems so incredibly unbelievable. Today Katlyns leukocytes went up again. Her neutrophils are at 100 for the second day in a row which is a blessing but the crazy part is that she shows 100 lymphocytes as well. I just cannot believe. We honestly did not expect to see lymphocytes so early. I even asked the doctor if it was possibly a mistake. Lol!! God is good. She is not feeling well again this morning. I made her pancakes and a piece if ham, but she had no interest. Then came the gingerale, salt and vinegar chips and zofran. Still waiting for her to come around. Her eating is very poor, although she is trying as hard as she can. Really really hoping she starts to feel better soon. (This picture was taken yesterday afternoon. Katlyn made herself and a treehouse out of playdough)
Day +17 This post will be short and sweet this morning. I promise to update more later. I just had to share this wonder news with everyone. Katlyn's white cell count almost doubled overnight...and she has 100 NEUTROPHILS!!! This amazing!!! Thank you all for your prayers and please continue to pray. Xo
Saturday, August 16, 2014
Day +16 We've been pretty busy the past couple of days taking care of Katlyn. Her appetite has gone way down. It is so frustrating because she normally is very picky eater, but right now she doesn't want to eat anything. Even the things she usually loves are not so appealing anymore. This is so frustrating because so far she has been able to avoid the feeding tube, and we are so close to making it through this without one. We do our best to push her and motivate her as much as we can but it is very tough because of her nausea and her dislike for food right now. In the past two days we have seen an increase in her leukocytes, which would be her white blood cells. She still has no neutrophils, which is the first white blood cell we look at, as of yet, but soon. Our first milestone will be with the neutrophils. Once Katlyn reaches 500 she will not be in danger as much as right now. She will actually be able to leave her room, with a mask and many precautions, but still!!! Pretty soon I will be talking about the neutrophils a lot. As we wait for Katlyn's immune system to start growing, Katlyn may feel very crummy and there may be some side effects for her like fever for instance. That is how yesterday and today has been for her. She has been experiencing headache, nausea, fatigue, chills, dizziness. Basically feeling like crap. Today Katlyn woke up feeling nauseous, and even with the meds they gave to help with this, she still felt like crap. She refused to take gravol as it makes her fall asleep, so I asked the nurse to give it to her without her knowledge. I just couldn't watch her feel like that. She did not need a transfusion yesterday or today, but her platelets are quite low. This evening she was eating a bit and smiling, so fingers crossed she is starting to feel better.
Wednesday, August 13, 2014
Day +13 was a little better than yesterday. Katlyn is still talking about needing a wig. Her hair is falling out way too fast. She literally pulls out chunks of it. She never cried about it today though. We kept telling her how beautiful she is. I explained at one point today that what she is going through is very hard, and most people could not go through this, and how she still manages to put a smile on her face is amazing. Her losing her hair was a symbol of this time and how brave she has been. I can tell it bothers her. Her platelets and hemoglobin were at good enough levels to not need a transfusion again today. The platelets are dropping quickly though so I imagine she will need a transfusion probably tomorrow. The nutritionist was pleased again today with what Katlyn ate yesterday, and once again she managed to avoid the feeding tube. She is working so hard. Even with her sore throat and now swollen gums, she still tries her hardest. She did need to have morphine twice today for pain but I think her throat might of felt a little better today. She just didn't seem to be in as much pain. She did have a few moments of nausea but no vomiting. Once again she received some lovely mail, and it is so amazing to watch her face light up as she reads all the messages of support. It also is quite overwhelming to see how many people are supporting us through this very difficult time. I've always believe that part of being healthy is positive thinking and smiling. It is toxic to worry and be sad. All of these wonderful cards, letters and packages are sure uplifting. Thanks so much.
Tuesday, August 12, 2014
Day +12 was a rough one. Last night I stayed with Katlyn as it was my turn. She woke up in the early morning hours wimpering. I got right up and she told me she was in pain and she was scared because it hurt so much. She was referring to her throat. I called the nurse to get her some morphine. I then help her in my arms until she fell asleep. She had her ultrasound this morning and then went right back to sleep. She was so tired. I can tell that this has all be very hard on her little body. She actually slept until noon, when the nutritionist came in and explained to us that if we worked very hard to get Katlyn to eat we could possibly avoid a feeding tube because we were so close to Katlyn's throat starting to feel better. We woker her up and spent all day trying to motivate her to eat.At this point it is not so much about the quality of the food that she is eating, but the calories. She has lost some weight already and we don't want her to lose anymore. Based on what Katlyn ate by the afternoon, the nutritionish was satisified enough to hold off on the feeding tube. She said that she would reassess tomorrow. Katlyn has really worked very hard all day to avoid that feeding tube. I also have to mention that she needed less morphine today than yesterday, which hopefully is a sign that the pain is starting to ease a bit. Both her hemoglobins and platelets were high enough to avoid a transfusion today which was great. I should also mention that Katlyn also never vomited today, although she was nauseous quite a bit. This afternoon she was trying to eat her snack and Johnathan was running aroung to the stores trying to get some food that might interest her, and I was playing video games. Katlyn says to me that she is losing her hair. I looked at her and she was serious. She told me that when dad was playing video games with her, she noticed a big chunk of hair fall out. I explained to her that this was a common side effect to the chemotherapy she recieved. I did not tell her about it before because I did not want her to worry about it. I explained that we needed to kill some important cells in her body to make the transplant works and because of that the very fragile cells, like hair, die as well. I explained that this is a small thing to lose to save her life. She asked me if it would grow back and I said that it would. For the next little bit she joked about it and then she would cry. She was on a rollar coaster of emotions. I am trying my best to comfort her through this loss, but this all of this is so hard for her. She is devestated and I can tell. She tells me that life is unfair and I agree that sometimes it can be and that I am so so sorry she has to grow through all of this. She is my little hero. I have never met anyone braver. So she asked Johnthan and I if would could find her a wig of golden blond hair like her own so that she doesn't have to be seen with no hair. We honestly don't even know where to start with this. We want her to be as comfortable about all of this as possible, but I'm lost and honestly way to tired to look for answers tonight. I will do my best to serach tomorrow and if anyone has any experience with this please let me know. Please continue to pray for Katlyn, as these are tough days. Thanks you all for the support.
Monday, August 11, 2014
So good news is that Katlyn does not need a transfusion today. Her last transfusions were enough to hold her over until now. Her bilirubin is elevated so she will be having an ultrasound tomorrow. This is normal because of all the drugs she is receiving and all the toxicity from the chemotherapy. The bilirubin often goes up, but we will be doing the test just to be on the safe side and make sure Katlyn's liver is ok. She is still having a hard time eating because her throat is so sore, it makes it very difficult to swallow. To help her with this, we give her morphine so that she is able to eat. You can tell she is in a lot of pain too. The morphine does not make Katlyn loopy or drowsy and that is because it is the perfect dose to help with her pain. Nausea is still a problem but so far today she has not vomited. She is getting zofran for nausea treatment all the time so it sometimes helps, and if it doesn't we turn to gravol. Gravol is not all always ideal because it makes Katlyn fall asleep. The nutritionist is happy with what Katlyn has been eating even though a lot of it is junk food. She told us to just feed her lots of food, as long as its within the neutropenia guidelines, and we can hopefully avoid having to do a feeding tube. We met with Katlyn's doctors today and were told that engraftment usually starts day +14-21, so until then we wait. This will be when Katlyn starts to get some of her cells back. YAY!!! Katlyn has been getting lots of mail, which has been uplifting. Today I could tell she was feeling a little down, and now she is busy working away on a making a story book. Her teacher was so kind and sent her these little blank story books. Its unbelievable to see how kind people have been to my daughter during this very difficult time. I can tell she feels so special opening each envelope and package. She reads all of your kind words and smiles and giggles. Thanks you so much for the lovely gift of support.
Sunday, August 10, 2014
So the transfusion went pretty well yesterday with no complications. Katlyn did have three separate episodes of nausea and vomiting and headaches were bothersome. Usually we try Tylenol first for the headaches and then hope it worsts but it has been obvious that it does not work. The pain is too much, and we really don't want Katlyn in pain, so we have decided to go right for the morphine. The dosage they have Katlyn on is perfect. She does not fall asleep. It does seem to cause some nausea at first, but today no vomiting. When Katlyn woke up this morning it became apparent that her throat was very very sore. She wouldn't even speak. When someone's neutrophils get very very low like Katlyns are right now, they become susceptible to mucositis. This is a known and very common side effect of chemotherapy. The nurse gave her morphine and now she is sitting here playing video game, eating fruit loops and drinking milk. Her white blood cells are completely wiped, so when her neutrophils start to come back the mucositis should get better and better. Her hemoglobin is fine today but her platelets are low, so it looks like she will be receiving a transfusion of platelets.
Saturday, August 9, 2014
Well I have to admit that this has got to be the hardest thing we have ever had to do with Katlyn. It is so hard to see your child in pain and not be able to do a whole lot about it. She has been getting these awful headaches in the morning and evening each day. So far we have been able to manage them with Tylenol but we let her know that if she needs more to let us know. The worst of it is that it is so bad that is causes nausea and vomiting. She is sluggish and doesn't move around much. Mornings start a lot later and even though today is started for instance, she is still laying in her bed nursing a headache and slowly trying to get some fruit loops down. As parents we do all we can think of to make her comfortable, but it still leaves us feeling helpless. Each day we watch her blood work. Right now we are not looking at the actual white blood cells as we know they are low and are going to stay low for awhile. We have been closely watching her hemoglobin and platelets each day and watching them go down. She is so tired and little bruises have been appearing on her skin. If her hemoglobin goes below 70 or platelets below 10, she needs a transfusion. Surprisingly and luckily Katlyn has never had to have a transfusion beside her IVIG treatments before. Today her hemoglobin is 67 so she will be needing a transfusion. Hopefully it will make her feel a little better. Please continue to pray for Katlyn. Right now we need to keep her safe more than ever as she is so susceptible to infection. I also hope and pray the headaches, nausea and vomiting go away and stay away too.
Day +7 has not been a great day. Katlyn woke up feeling sick. She barely ate any breakfast and then had a nap due to the dose of gravol she needed due to nausea. She finally woke up around noon but hardly ate or drank much all day. She stayed in bed and you could tell she was so tired. Her gut seems to have calmed down today anyways. After supper she complained of a headache. We gave her Tylenol and she was sick right away. Gave her Tylenol again and she dozed off a bit. Woke up and was sick two more times. The nurse gave her another dose of gravol and so now she sleeps. The nurses warned us day +8 was when children usually get sickest. Her cyclosporin dosage was increased today so maybe the headache and nausea could be from that, or it may be the chemo. We are hoping that when she wakes up she feels much better. I really missed her smile today. Please pray for little Katlyn.
Wednesday, August 6, 2014
Sometimes it is hard to find the time to write because even though we are trapped in a hospital all day, we are extremely busy. There are just so many preventative things we must do to keep Katlyn healthy. For instance, she must have cream applied all over twice a day, lip stuff twice a day, two separate mouth washes four times a day. We are tracking everything she eats and drinks on one sheet of paper, and everything that she drinks and her output on another piece of paper. On top of that we are meeting with a few doctors each day, several specialists, trying to keep our eye on everyone that comes around Katlyn, keep Katlyn calm and entertained and struggling with her eating, and course fitting in making sure we get a little bit of food once in awhile. Yesterday was extermly hectic. As I mentioned in my previous post, Katlyn tested positive for norovirus. Well, in this unit before you enter the actual patients room, there is a prep room. This rooms allows you to put on your gown, mask, wash your hands and clean anything off that you need to bring in this room. Well, with Katlyn's room we shared this prep room with the room next to us. This becomes a problem when Katlyn not only tested positive for norovirus, but especially since she is stooling and there is another immune compromised patient next to us sharing this space. So we were told that Katlyn would have to change rooms. I totally understand and I think it is great that they take measures to make sure all patients are safe. It just gives me a little more piece of mind. Not an easy task though. Everything that went into Katlyn's room had to be cleaned before it went in there. We did not want to have to go through the whole cleaning everything off once again, so we decided to put everything in pillow cases and transport it all over to her new room. So now we have found a new home for everything. We are loving the new room as it is larger and more comfortable and has a great view!! We have met with Katlyns doctors about her progress so far and she is moving along just as planned. She is having the problem with maybe norovirus or maybe chemotherapy on her gut, or even a combination of both. Other than that Katlyn is a smiley little girl, anxious to get better. The doctor this morning was quite surprised to see how well Katlyn. She thought she was going to see a sick little girl. Instead she sees Katlyn smiling and chowing down on ham and waffles. LOL!!! They say day +8 is typically the worst. One of her doctors said Katlyn might not get any sicker from chemotherapy because of the low dose. Fingers crossed that's the case. Please continue to pray for my little sweetheart. It is so warming to know we have so many people who care behind us. p.s. These pics are of Katlyn's new room and that little prep room I was writing about.
Tuesday, August 5, 2014
Saturday, August 2, 2014
Day +1 was a pretty good day. Katlyn and Johnathan had been up for most of the night before but they were in good spirits. I can tell Katlyn is having problems with her stomach but hopefully it resolves itself quickly. We have been told for the weekend to focus less on making sure Katlyn gets the right balance of the right foods and more on getting enough calories. She does not have much of an appetite and I hate it. She is still eating though, and we still have not had to turn to a feeding tube. They watch her weight and intake and outtake very closely. Today katlyn got her ivig, which she will continue to receive every week. At one point today Katlyns blood pressure was high, so they gave her medicine to lose it, And then hours later it was low. My mind was put at ease tonight though when it was back to normal. I also do notice that she has been getting a lot of headaches too, but overall she is doing well. Better than I expected, and she has a good attitude for most of the day.
Thursday, July 31, 2014
Tuesday, July 29, 2014
So today marked the last day of Chemotherapy. whew!!! Busulfan did have to be bumped up in dose and then an extra day added, but that part is over now. Today was a pretty good day considering. My girl was smiling a lot which makes us so happy. She would hum and whistle. Despite being trapped in this little hospital room and being bumped full of drugs that make her feel all crummy and being picked at a lot, she still manages to magically make me smile.