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.