tag:blogger.com,1999:blog-32444406670752894432024-03-13T16:36:16.115-04:00Katlyn's Struggle with ADA SCIDKatlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comBlogger226125tag:blogger.com,1999:blog-3244440667075289443.post-44637520796062652712015-04-09T14:39:00.001-04:002015-04-09T14:39:22.061-04:00Day +252Day +252 Finally things are starting to look up for us. Katlyn had her appointment at the IWK yesterday and by the time we left we felt on top of the world. For starters, Katlyn’s new medication working wonders!! She is able to hold her weight and is now eating a regular diet. This takes so much stress off of us. We have also got news from our insurance that they will be covering this special access medication for Katlyn at 80% which is amazing!! She will need this medication until she can get rid of the norovirus so we are looking long term. Using the fundraised money to pay the copay, we will be able to keep her on this medicine long term. Great news considering we had raised money to pay for a couple of months and Katlyn’s doctor informed us that if it worked she would need it long term.
Next, Katlyn’s doctor has reduced some of her medication. This means 5 less pills a day. This is enormous considering she was taking 22 meds daily. This is because she is able to finally absorb some nutrients from her food, so she is not needing as much supplementation.
Katlyn’s doctor feels as though Katlyn is getting stronger and more stable. If all goes well we may be able to split the appointments up between the IWK and Fredericton. The plan is to return in two weeks and if she is still this well, the following trip will be local. This means only having to travel 4.5 hours away once a month!!
Katlyn had an infusion of iron yesterday which was a huge boost, making her feel incredible. She didn’t want it to end because she said it was making her feel so good. The hopes are to give Katlyn 4-5 infusions to get her levels up and hopefully maybe her iron will level out after that, thus resulting in her hemoglobin also regulating. Katlyn’s labs did look pretty good. Her hemoglobin was about the same as two weeks ago, which means it is not dropping. Also, her platelets are finally in normal range.
Now I saved the most exciting news for last. We have been waiting for cell growth, specifically Katlyn’s lymphocyte count to come come up. And even more specifically, her tcells to come. Well Katlyn has always had problems with low lymphocyte counts. Before her transplant she averaged 100, which is very very low. Lymphocytes are the part of your immune system that protect you from and fight viruses. Well last visit her count was a little over 500 but we never got two excited because we’ve seen that before and then drop. Well yesterday we were amazed to find out that Katlyn’s lymphocyte count is 810. Finally!! I could have cried. The doctor was so excited. She said that now we can start to work on some of Katlyn’s post transplant tests like a pulmonary function test and dental. We have not been able to do any of this because Katlyn was too at risk. Now we know we still have a long way to go, but this is the little bit of hope we need to get us through this. The more Lymphocytes that Katlyn has, the more of those can be tcells.
Our little girl is growing!! In height, in weight and with a beautiful functioning immune system someday soon. God gets all the credit. He has given us the strength to get through this. A miracle is taking place and Katlyn is going to be well. All the prayers and love and support that has pulled us through this all. I know there will still be bumps and we have to protect Katlyn from germs as she is still very immune compromised, but I am very optimistic. We will get there one day at a time. In the meantime, please continue to pray for Katlyn. God bless.<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-WO-JWPwj8ow/VSbHRutoCqI/AAAAAAAACcs/hy-TVyJw8JM/s1600/11092932_10155463756825249_1494750420_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-WO-JWPwj8ow/VSbHRutoCqI/AAAAAAAACcs/hy-TVyJw8JM/s400/11092932_10155463756825249_1494750420_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-8732636592925327182015-04-09T14:36:00.003-04:002015-04-09T14:36:58.162-04:00Day +235<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-DiydMRhmxtI/VSbGk-XmjuI/AAAAAAAACck/D0t4vMwQfzY/s1600/10994880_10155392577625249_7195591622839822325_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-DiydMRhmxtI/VSbGk-XmjuI/AAAAAAAACck/D0t4vMwQfzY/s400/10994880_10155392577625249_7195591622839822325_n.jpg" /></a></div>
Day +235 we are headed to the Iwk to start the new medication to hopefully get rid of the norovirus. I pray it works. We need a miracle. Katlyn is doing very well for the most part. It's so hard to believe how much better she gets everytime we come here. This trip she wanted to bring toys and as soon as we got to Halifax she wanted to go exploring with her Dad to the park. So different then just spending her time sitting on the couch.
We do still have the issue of no tcells and low hemoglobin but hopefully we will see some improvement soon.
So please send your good vibes and lots of prayers. We need this medicine to work!Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-40149405062452780852015-04-09T14:35:00.000-04:002015-04-09T14:35:43.093-04:00Day +219Day +219 know it's been awhile since I've updated but that is because Katlyn has been feeling a little better each day. With each days come a little more energy to do things and keep us busy. I have also been doing some fundraising to raise money for an important medication for Katlyn. Katlyn's doctor has approval from health Canada to try a drug not commercially available in Canada, but has worked to fight norovirus. Because Katlyn has not tcells to fight norovirus on her own, this is what is causing her so many problems.
We did have a check up this week at the IWK. They were very happy with Katlyn's progression. We have been given the green light to try so ng feeds for two weeks, and if all goes well, we will be taking her tube out. She is so excited about this, as the ng tube causes so much fear and anxiety for Katlyn. She does so well tolerating so many invasive procedures, but the ng tube has to be inserted through her nose into her stomach, and she hates it. I cannot say I blame her. Our girl has been put through so much, and everyone has a breaking point.
Hopefully good news soon. Also, Katlyn has been receiving sub q injection twice a day and next week we are going to try and take one of the injections away. Since there is no food pumping through her stomach through the night, and her gut gets to actually rest, its possible she might tolerate it. I pray she does. Her poor little arms are so sore, tender and all bruised from the injections.
It looks like we will be starting the medication to hopefully fight the norovirus in a couple of weeks. I have told the pharmacy to go ahead and order the first month. The province or insurance are not covering the cost of this medication, but thankfully our great friends and family have pulled through and so far we have almost raised enough for 2 months of medication. Thanks so much for all your support. It is so heartwarming and overwhelming.
When Katlyn starts this medication, she will need to be hospitalized at the IWK for some close observation for a few days. Since this is not a drug approved for use in Canada, except for in our special case, they want to document the safety and hopefully the proof it clears the virus.
Katlyn's newest chimerism test is still 100%, which is amazing. All of her cells are all donor and keep showing us the same results over and over again. We are still waiting on her slowpoke tcells. These tcells are so important. They will allow Katlyn to live a normal healthy life. Also Katlyn's hemoglobin has been low. Her blood work also shows that her iron is low as well. So she has been put on a high dose of iron supplement to treat her anemia. She has tons of energy even though she probably is quite tired. I think its because in comparison to how she felt before, she is feeling great. I cannot only imagine how amazing she will feel when we get the anemia under control.
Please continue to pray for our little girl. She is going to get through all this and be strong and healthy. We need all the support we can get right now.
Anyone wanting to donate to Katlyn's medical fund:
http://www.gofundme.com/n82m4sKatlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-1495870538713282142015-02-17T09:34:00.002-04:002015-02-17T09:34:32.825-04:00Day +198Day +198 Happy Valentines everyone. We will be spending the day cuddling and being so grateful we have each other and this little bucket full of love. Are we ever blessed!! She is doing well. Not much has changed. Just waiting for those tcells to come so Katlyn get out of isolation and back on with her life.<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-YTueEyP-Ekc/VONDYTzibiI/AAAAAAAACb8/QQ6WovMmjxI/s1600/1385830_10155240827360249_5463944444009983299_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-YTueEyP-Ekc/VONDYTzibiI/AAAAAAAACb8/QQ6WovMmjxI/s400/1385830_10155240827360249_5463944444009983299_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-65666701749767484542015-02-17T09:33:00.000-04:002015-02-17T09:33:25.260-04:00 Day +192So happy to update that we are back home after spending the weekend in the hospital. Katlyn had a fever most of the weekend and a terrible headache and lots of body aches. All of her cultures came back negative so the fever is probably viral. Katlyns fever broke last night. It's really hard to explain what I mean, as I'm unfamiliar with the whole fever thing, but as soon as it was over I knew it was done finally. She woke up this morning feeling great and doing great. Antibiotics were stopped and we were sent home. Yay!!<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-q2U-jNHTbns/VONDF9jgJJI/AAAAAAAACb0/T_Ecx3JdlDs/s1600/10689464_10155220193420249_2220516638858054850_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-q2U-jNHTbns/VONDF9jgJJI/AAAAAAAACb0/T_Ecx3JdlDs/s400/10689464_10155220193420249_2220516638858054850_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-1129848812159136872015-02-17T09:31:00.000-04:002015-02-17T09:33:47.254-04:00Day +190Katlyn spiked a fever yesterday and she has been admitted to our local hospital while they run some cultures and start her on antibiotics. Hopefully it's nothing big and we are back home soon. She really has come around a lot since yesterday so I think she is starting to feel better. She also no longer has a fever.<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-9wN4EGWkQpM/VONCnerqaJI/AAAAAAAACbs/4NSS_nXTtp8/s1600/10989132_10155214782680249_8545825747590951177_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-9wN4EGWkQpM/VONCnerqaJI/AAAAAAAACbs/4NSS_nXTtp8/s400/10989132_10155214782680249_8545825747590951177_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-83985100975764336282015-02-17T09:29:00.002-04:002015-02-17T09:29:51.913-04:009 years oldOh how amazing it is to spend this wonderful day with this beauty at home. What a sweet blessing. God is good. HAPPY BIRTHDAY Katlyn Demerchant. XOXOX<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-OP1gJ3q_ICI/VONCSVN08HI/AAAAAAAACbk/tiI0nSFS4_E/s1600/1545134_10155208742225249_3509043779009355077_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-OP1gJ3q_ICI/VONCSVN08HI/AAAAAAAACbk/tiI0nSFS4_E/s400/1545134_10155208742225249_3509043779009355077_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-87729395358868949102015-02-17T09:28:00.002-04:002015-02-17T09:28:22.044-04:00Day +186Day +186 Not a whole lot going on except for being extremely cute. Katlyn has been doing awesome. She has been playing out in the snow everyday and doing lots of crafts and playing in her room. Her menu of foods that she can eat is increasing slowly everyday. Bacon is even on the menu! ! We were lucky enough to be home over the past two weeks. We will be heading to Halifax this week for Katlyns ivig and bloodwork. Not a whole lot going on for this appointment but I just know they are going to be so pleased with Katlyns progress! ! She has been able to maintain her weight. We are just patiently waiting for her tcells so that she can get out of isolation. Katlyn turns 9 on Thursday! ! We are so lucky and grateful to have her in our life. Please keep Katlyn in your thoughts and prayers.<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-vlqhR3W6WUs/VONB8IQh6jI/AAAAAAAACbc/dPBS0ffV8m4/s1600/10947256_10155199446595249_4159360988752260596_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-vlqhR3W6WUs/VONB8IQh6jI/AAAAAAAACbc/dPBS0ffV8m4/s400/10947256_10155199446595249_4159360988752260596_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-85532436488077020932015-02-17T09:27:00.002-04:002015-02-17T09:27:35.562-04:00Day +174Day +174 I'm so happy to announce that we are finally home! ! And it's awesome. The new medication Octreotide is working wonders and keeping our girl safe. The unfortunate thing is that this medication can only be given iv or sub q injection, so Katlyn has to get a needle in the morning and in the evening. The volume is pretty high and it is extremely painful for her but she is already finding ways to cope. She really truly amazes me with how brave she is.
Katlyns target for her ng feeds was 70 ml/hr but after they did a calorie count of the food she was getting by mouth (over 1000 calories) they decided 55 was enough.
There seemed to be a difference in the way her body absorbed the medication between iv and sub q so yesterday did not look so good for us and we thought for sure we were not leaving. They increased the medication and already we are seeing improvement.
She is like a completely different child from before. She is almost to her old self. She was strong enough to walk out of the hospital herself and quickly took over the radio in the car while she took in the scenery. She is so happy to be here.
If all goes well she will not have to be seen for two weeks at the iwk.
Thanks to everyone for all of your prayers and support during this extremely difficult time. Katlyn was in very tough shape but slowly she is getting better everyday. Thank God.
Tired right out but so happy!!<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-M9m4siR0rh0/VONBwa_QTBI/AAAAAAAACbU/lI2JWsWzuW4/s1600/10931319_10155156668375249_5934036110560845272_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-M9m4siR0rh0/VONBwa_QTBI/AAAAAAAACbU/lI2JWsWzuW4/s400/10931319_10155156668375249_5934036110560845272_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-61859419530422245672015-02-17T09:26:00.000-04:002015-02-17T09:26:10.790-04:00Day +166Day +166 Not a whole lot off change in things lately. We did start a new medication today called Octreotide. This medicate will reduce Katlyns output if she has a secretion problem from the norovirus our something else. It will not help if the problem is a bacteria overgrowth. Because Katlyn is so sensitive and having a problem with antibiotics we thought this would be the safest way to go first. The gi specialist started Katlyn of with a very tiny test dose today just to make sure she doesn't have any problems. It's not standard practice but the way Katlyn has these strange sensitivities we didn't want to create a huge problem.
We will start the minimum standard dose tomorrow morning. If she is going to get some results it should be pretty quick as it is fatty acting. We will probably know over three next few days I imagine.
The other possibility is that Katlyn may have a bacteria overgrowth. There are two treatment options for this. Probiotics and antibiotics. Probiotics are not even a possibility as Katlyn is immune compromised and they can cause a major problem. Katlyn has an extreme sensitivity to antibiotics, so if need to go that route we will have to do some working around with the dosing. If any of you recall, antibiotics are the primary reason for both hospitalizations. We will cross that bridge when we get there. Hopefully we know more in a few days. It's so frustrating having no idea what is wrong with our baby girl.<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-Sp-OCwmE4Ks/VONBbYR_U-I/AAAAAAAACbM/8qWqlYTAsGY/s1600/10923491_10155128786300249_4485713554310256870_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-Sp-OCwmE4Ks/VONBbYR_U-I/AAAAAAAACbM/8qWqlYTAsGY/s400/10923491_10155128786300249_4485713554310256870_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-82924561671972328462015-02-17T09:25:00.000-04:002015-02-17T09:25:25.806-04:00Day +162Day +162 We have been given the okay to try food again! ! Katlyns ng feeds are only up to 40 ml/hr but we are thinking 70 might be too high and we might need her to eat to get some calories as well. She is one happy little girl. She had a lot of tummy aches yesterday with the food and was scared to tell me but I assured her that it was normal her stomach would be bothered since she hasn't ate in so long. She feels stuffed because her belly has shrunk so much. So hopefully we keep moving forward and get this girl home soon. She is much stronger and has so much more energy. It will be amazing to have her at home with all of her toys and craft supplies.
Her bloodwork has been excellent as well. Not much to complain about thankfully. Finally all electrolytes have stabalized and her marrow seems to be getting stronger. We are still patiently waiting for her t-cells which are due anytime now. These are the necessary ingredient to help Katlyn fight a real infection. I pray they come soon.<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-VZy0nc5Yuqo/VONBP3rxjrI/AAAAAAAACbE/KB_mLNQka5Q/s1600/10523558_10155111409030249_3318147878046113489_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-VZy0nc5Yuqo/VONBP3rxjrI/AAAAAAAACbE/KB_mLNQka5Q/s400/10523558_10155111409030249_3318147878046113489_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-74423094018733155372015-02-17T09:24:00.001-04:002015-02-17T09:24:28.080-04:00Day +158Day +158 still no plans to go home but everyone is trying so hard to make that happen. Hopefully soon though. I did want to share with everyone some great news though. I spoke with the nutritionist today about Katlyns weight. She mapped it out and she is now in the 50%!! She also charted her weight and height and she is ideal weight for her height. This is amazing!! Katlyn is now up to 27 kg, up from 19.7 kg in November. Katlyns doctors, specialists, nutritionists and nurses have worked so hard with us to get her healthy and have done amazing work. She is strong and has lots of energy. We are working away at trying to get her feeds up and her tpn down so that she can get home. Hopefully soon!!Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-57131434555880475242015-02-17T09:23:00.000-04:002015-02-17T09:23:57.139-04:00Day +155Day +155 Not to much has changed since my last update. We have tried a few things but still have no real answers. Every time we feel like we are going forward, it all comes to a crashing halt. It is very important to get Katlyns ng feed up to 70 ml/hr to go home, but at this point she cannot tolerate it. We are all so frustrated and exhausted. We want Katlyn better so we can go home.
She is gaining weight nicely and is no longer vomiting, but only because of the lack of food and tpn and lipids, which cannot be done at home.
We are all trying to stay strong but its getting hard. Katlyns spirits are great, so that helps, but this is a long bumpy road.
We are waiting on Katlyns latest norovirus test. If she is still positive we are going to try treating her with something (not sure of name yet). She has been taking flagyl, which treats bacterial gut infections, and she has responded well. Just not well enough for freedom yet. There is a possibility we may go up on that as well. We will see what happens. Hopefully we can work out a good plan soon before all three of us go crazy lol.<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-qYiAFB29WN0/VONA5XNf1KI/AAAAAAAACa8/n1r4leQh81Y/s1600/10906384_10155060477380249_5757193805239908604_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-qYiAFB29WN0/VONA5XNf1KI/AAAAAAAACa8/n1r4leQh81Y/s400/10906384_10155060477380249_5757193805239908604_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-10249270737742481272015-02-17T09:21:00.000-04:002015-02-17T09:21:21.807-04:00Day +141Day +141 Not a whole lot has changed with Katlyn. She has lots of of nausea and vomiting. Last I posted we stopped the enzyme. We did attempt to restart it yesterday, and Katlyn got very sick very quickly. We stopped it today, and she started to feel better a few hours later. We have been going around in a circle trying to figure out what is going on. A scope was performed over a month ago, and we no longer feel as though this would be necessarily applicable to now. Things may have changed. So she is going to be having a new scope done with lots of tests and biopsies to see if anything has changed. In the meantime we will stop the ng feedings and Katlyn will be on clear fluid only. She will get all of her nutrition through tpn and lipids and nothing in her gut, to give it a break once again. This break had not done much in the past, but hopefully this time it will calm things down. Hopefully we don't find anything wrong in the scope, but it is very important to rule out gvhd, new viruses and bacteria and parasites. It may just be that the flora in Katlyns gut is all wonky because if the antibiotics. In a healthy person you could use probiotics to correct this, but unfortunately not for Katlyn as she is immune compromised.
This is by far the hardest and scariest thing we have ever gone through with Katlyn. I can really see it is taking it's tool on the the of us. Please keep us in your prayers, especial Katlyn.<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-3rFFDcyazpg/VONARNIZWbI/AAAAAAAACa0/DokDmvXalM4/s1600/551472_10154985416215249_5550660995897856876_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-3rFFDcyazpg/VONARNIZWbI/AAAAAAAACa0/DokDmvXalM4/s400/551472_10154985416215249_5550660995897856876_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-64558835805214718052015-02-17T09:20:00.001-04:002015-02-17T09:20:23.396-04:00Day +139Day +139 the enzymes have been stopped because Katlyn started to have increased nausea with vomiting. 24 hours after the break, the enzymes do not seem like the culprit for the vomiting. It seems as though her stomach is not emptying quick enough so the formula just sits and makes her feel sick and then she throws up. This seems so crazy because at the same time everything is going right through her, and that's increased a lot over the last couple of days. This is so frustrating because noone really seems to know what is going on. She looks like she has lost some weight again. We really need prayers right now.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-30322337693878038772014-12-16T22:04:00.002-04:002014-12-16T22:04:25.554-04:00Day +136Day +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.<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-gxNjhjbcvSM/VJDkpEu3sBI/AAAAAAAACac/bTjHcEaahzc/s1600/10247282_10154966125965249_7197074237674715311_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-gxNjhjbcvSM/VJDkpEu3sBI/AAAAAAAACac/bTjHcEaahzc/s400/10247282_10154966125965249_7197074237674715311_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-37730521012276634602014-12-16T22:03:00.002-04:002014-12-16T22:03:46.547-04:00Day +132Day +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!!!<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-6LNoPQb1oWU/VJDkfODI4tI/AAAAAAAACaU/pl-8pUgRiF4/s1600/10858542_10154952949780249_2197464690742647165_n%2B(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-6LNoPQb1oWU/VJDkfODI4tI/AAAAAAAACaU/pl-8pUgRiF4/s400/10858542_10154952949780249_2197464690742647165_n%2B(1).jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-84368828840952451532014-12-16T22:02:00.004-04:002014-12-16T22:02:56.091-04:00Day +131Day +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.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-48534485395982432892014-12-16T22:02:00.002-04:002014-12-16T22:02:39.908-04:00Day +130Day +130
Beautiful little tree we decorated today to bring soon Christmas spirit into Katlyns room. We are sooo blessed to have eachother through this.<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-QaGaYE4uPBk/VJDkOgyo-PI/AAAAAAAACaM/zg2rzqZXwSQ/s1600/10857872_10154945120195249_5503286461143406128_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-QaGaYE4uPBk/VJDkOgyo-PI/AAAAAAAACaM/zg2rzqZXwSQ/s400/10857872_10154945120195249_5503286461143406128_n.jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-16069555888847945952014-12-16T22:01:00.000-04:002014-12-16T22:01:56.099-04:00Day +129Day +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! !<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-D2AnoHp9O6c/VJDkCEq_5hI/AAAAAAAACaE/ldKUItDg59g/s1600/10850143_10154940298970249_6565009461035344036_n%2B(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-D2AnoHp9O6c/VJDkCEq_5hI/AAAAAAAACaE/ldKUItDg59g/s400/10850143_10154940298970249_6565009461035344036_n%2B(1).jpg" /></a></div>Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-90508086804524214502014-12-16T22:00:00.001-04:002014-12-16T22:00:02.713-04:00So 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.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-12470246996033796782014-12-16T21:59:00.005-04:002014-12-16T21:59:48.240-04:00Day +125Day +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.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-67890827287216946522014-12-16T21:59:00.003-04:002014-12-16T21:59:32.719-04:00Day +124Day +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.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-88688093537356248732014-12-16T21:59:00.001-04:002014-12-16T21:59:17.660-04:00Day +121Day +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.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.comtag:blogger.com,1999:blog-3244440667075289443.post-66947228436362807952014-12-16T21:58:00.002-04:002014-12-16T21:58:54.002-04:00Day +119Day +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.Katlynhttp://www.blogger.com/profile/05571278341362741160noreply@blogger.com