Monday, November 30, 2015

Days +54/+55

Raul has needed GCSF several times now due to his ANC being at 1 or below. The doctors think this is most likely being caused by the anti-viral medication he is on, but unfortunately he has to be on that for another three weeks. They assume that his counts will return to normal after that medication is stopped. There are other possibilities that would be more difficult to treat, but right now they think it is just due to the medication he needs to treat his CMV. 

Sunday Raul got a platelet transfusion overnight, and a blood transfusion during the day. His weight was up, but his BUN was pretty good, and we were still able to skip dialysis. He seemed to be needing his blow by oxygen more, which may have been in part due to the excess fluid weight. We did get him to sit up a couple times, and to go on a very brief walk in his stroller. He mostly wants to just rest, but his spirits did seem a bit better.

Today he got up for PT and actually did really well despite a 104.9 fever and a high heart rate! His fevers have been high, and not responding as well to tylenol, but that is about all he can have for them. He had dialysis today, though his weight still wasn't up due to all the diarrhea (we think). We are now replacing half of what he loses with IV fluids so that he doesn't get dehydrated. We also cut his feeds back to 35, which is still high enough that we do not need to restart TPN, but low enough that it may make a little difference for his GI issues. We are also getting the "big gun" butt paste as his skin is really starting to break down there from the diarrhea.

They think one of the medications for the BK virus might be worsening the diarrhea, and that dose was cut down a little today, so hopefully we will see some improvement. That same medication can also raise his bilirubin again, and we have seen a bit of an increase, so I am hoping that will go back down now too. We did test for c diff. again today, and that was still negative, which is good! 

We also have started to decorate for Christmas!





Saturday, November 28, 2015

Days +52/+53

The good news is that Raul is now negative for the HHV6 virus, and his CMV level is down! He will remain on the Gancyclovir for three more weeks (6 weeks total), as we want to get rid of it and keep it away! The bad news is that his BK virus level has gone up significantly, so we need to try to treat it. Raul cannot use the medication that might be most effective as it would likely cause irreparable kidney damage, so he has to use the other option. He is getting Cipro and Leflunomide nightly. This is a cocktail often used for those who have had kidney transplants, and it was recommended by Nephrology. They will watch his viral levels and he will stay on the medications as long as necessary. 

It is possible that the BK virus is keeping his kidneys from healing, but the Nephrologist said that would be more likely at an even higher level (and the only way to confirm would be a kidney biopsy, which is not a good option for him). The doctors are running a few other tests to look for other causes, and it sounds like the things they are looking for would all be treatable, which is good! We are also planning to go back to our regular 4 day a week dialysis schedule, which will be nice, as we only got one day off this week!

Raul is still having his high fevers and is more tired than usual. It is possible the high level of the BK virus is making him feel icky, but we don't know for sure. We did get him onto his floor mat for about 20 minutes today though, and yesterday I got him to sit in a chair for about 15 minutes. We need to try to get him up and taking deep breaths to help get him to not need the blow by oxygen while asleep. We have gotten his formula up to 40 ml/hr, so hopefully he can get off TPN soon! He still throws up with his fevers, but he doesn't seem to be throwing up any more often with the increased formula. 


 
Last night Raul and my dad played with his fake snowballs for quite a while


Thursday, November 26, 2015

Day +51/Happy Thanksgiving!

Happy Thanksgiving! The hospital had two Thanksgiving meals today. I was able to eat lunch with two other BMT moms, and then Raul joined us in the evening for dinner. He had some high fevers today, but it was good to get him out of the room for a while! He has been refusing to wear clothes lately, but I even got him to wear clothes for dinner! We also woke up to snow today, which was fun. Raul liked watching it out the window. I also included a picture of the Thanksgiving picture Raul's nurse made for him yesterday, and that he colored with PT :)









video

Wednesday, November 25, 2015

Days +48, +49, +50

We are now on day +50 and have been in the hospital 71 days. Raul's WBC and ANC had started to drop a bit (it is normal with the low dose chemo for them to go up and down for a while), so he got one dose of GCSF on Monday night. He got blood overnight Sunday and platelets overnight on Monday (the platelets were for a nose bleed, his level was actually okay). He will most likely need blood again on Friday during dialysis (they prefer to do it during dialysis so that they can pull off the extra fluid and just leave him with the cells).

His CMV level was down at the last check, which was great news! He is still getting the antiviral medication, and they will check his level again at the end of this week. His line cultures continue to be negative, and we have been lucky that his PICC line is still working. We may, or may not, go back to the Hickman. This line will likely not work as long as we need it to, but we may be able to place a second PICC line instead of doing the full Hickman. We have been able to cut back on his TPN as he is now up to 30 ml/hr of 1.5 calorie formula! His goal is 45 ml/hr, so we are getting close. He is still having high fevers, up to 105, and lots of vomiting when he does have the fevers.

Raul started needing blow by oxygen over the weekend, and has continued to, though mostly when sleeping. He had a chest x-ray Sunday night and a chest CT Monday afternoon. Amazingly, his CT actually looked better than the last one! He nodules that may have been infection have mostly cleared. He did have some of what was most likely atelectasis, which is not surprising since he is not sitting up as much right now and not taking enough deep breaths. We have been trying to think of games/activities that will help him take deeper breaths. They would normally consider using the high flow oxygen again, but since he has been having so many nose bleeds that isn't really an option. Though thankfully, it has now been over 48 hours since his last nose bleed!

On Monday Raul also had a repeat kidney ultrasound now that we are 6 weeks into kidney failure/dialysis. Thankfully, his kidneys did not look worse, and his bladder actually was somewhat distended with urine (a good sign since that means he is peeing even if we can't always tell due to his diarrhea). One kidney was the same as before, and one was slightly smaller. However, they were enlarged originally, so a little bit of shrinking would be good, we just want to avoid significant shrinkage! The nephrologist still thinks that as we get rid of more of the kidney toxic meds., that he will get at least some kidney function back. And she said that you don't actually even need THAT much kidney function to be able to come off dialysis, which is good to know! We also got the good news today that his Voriconazole level is high enough that we can stop the other antifungal that is very tough on the kidneys!




Kissing his airplane he got after his CT scan


Sunday, November 22, 2015

Day +46/Day +47

Raul had three hours of dialysis yesterday, and got the day off today. We have been working on increasing his g-tube feeds by 5-10 a day, and he is now up to 30ml/hr. He had two fevers in the mid-104s yesterday, so they restarted his antibiotic, but will take it back off if the blood cultures come back negative. Today his highest has been in the 103s. His oxygen sats have been dipping, so we started blow by oxygen again, but he isn't needing much.

Raul had another bad nose bleed yesterday so got platelets. His nose bleeds quite a bit when he gets a nose bleed, so he always ends up throwing up a lot of the blood as well because it drips down his throat. So far today it hasn't bled at all! He slept in this morning until being woken up around 9:45, and then took a good nap this afternoon. He has mostly just wanted to rest the past couple days, but has also played his iPad a bit and watched several movies.

WBC:
2.7 (11/21)
2.5 (11/22)
ANC:
1.4 (11/21)
1.3 (11/22)
 
 

Day +45

Raul's kidney function labs took a big jump today, which nephrology now thinks was because we increased his g-tube feeds but his TPN/Lipids had not been decreased so he got extra protein. So he had 3 hours of dialysis today and will have 3 hours tomorrow. They also think he has legitimately gained some weight, so they will not be pulling him down quite as low during dialysis. He will have an ultrasound next Monday to check how his kidneys are doing.

Raul had more bleeding from his nose this afternoon, so he got platelets. Our good news of the day was that his CMV viral level went down this week! He also did a good job drinking his thickened liquids with speech therapy today, and he will have a swallow study next Tuesday to make sure things look good on the inside as well. He will also have a repeat chest CT next week to see how his lungs are looking. Raul's fevers today were not as high as yesterday, which was great! 

This video is from a few days ago, the video is saying "if you're happy and you know it stomp your wheels". He got pretty into it, but I only got a few seconds on video! 

WBC: 4
ANC: 2.4

video

Thursday, November 19, 2015

Day +43/Day +44

The past couple days have been pretty boring, which is good! Yesterday Raul got dialysis in the morning, and did OT in the afternoon. Today he got to skip dialysis, but did PT and had a bandage change. Other than that he has mostly been resting, but playing a little too!

Raul's Defibrotide went on hold last Saturday due to bleeding, and today they decided to just stop it altogether. He is not having signs of VOD right now, and he is well past the initial 21 day course. They also stopped his antibiotic (but left his antiviral and antifungals), as there was a chance it could be causing fevers. He has been stable despite continued high fevers, so we will just watch him closely for any signs of bacterial infection. We are also going to cut back a bit on his anti-nausea medications to try to eliminate any meds. that could possibly be causing issues.

He continues to have fevers in the 104 range at least once a day. However, all his line cultures continue to be negative, and his GI biopsies did not show GVHD or infection. Since we did not notice an improvement in his GI symptoms when he wasn't eating, he is now allowed to have his yogurt again and we have restarted his g-tube feeds (currently at 10 ml/hr).

WBC:
4.9 (11/18)
5.3 (11/19)
ANC:
3.2 (11/18)
3.7 (11/19)
 


 

Tuesday, November 17, 2015

Day +42

Raul slept pretty well last night, but when he woke up he had a 104.7 fever. He threw up once while he had the fever, but luckily that was the only time today. At noon he had his GI scope, and we should get preliminary results tomorrow from the biopsies. We had been hoping we might be able to skip dialysis tomorrow, but based on his labs tonight that is unlikely.

Despite his fever still being pretty high, Raul did really well with PT this morning! He did the fishing game again, and then we actually got him to lie on his stomach for a few minutes in bed! His hips have gotten pretty tight over the last couple years, so we are trying to stretch them out. Surprisingly, he didn't even complain much about it. During the time he has been admitted, his core and arm strength/flexibility have improved, which is great!

WBC: 7.3
ANC: 5.5

Monday, November 16, 2015

Day +41

Today wasn't too eventful, which was good! We did four hours of dialysis to see if we might be able to skip Wednesday. He has been peeing pretty well, his weight hasn't been up, and his kidney labs have not been going quite as high. He got platelets this morning, and blood during dialysis. We are hoping to keep his hemoglobin up a bit, as the kidneys do better with a higher hemoglobin.

Raul is still having fevers, and still having nausea/vomiting. He will be having a GI scope tomorrow to see if they can identify any source for his GI issues. They were leaning towards keeping him NPO again today, but he talked them into letting him have just a few bites of yogurt (he will be NPO tomorrow again for the scopes). He is still feeling pretty crummy, and napped most of the afternoon.

WBC: 4.4
ANC: 3.1



Sunday, November 15, 2015

Day +39/Day +40

Saturday was a very long day. Raul's nose appeared to have starting bleeding overnight Friday, and continued heavily throughout the day. Some of it came out of his nose, but even more ran down his throat and then he was throwing up large amounts of blood and huge blood clots on and off. He got platelets twice and blood once, as well as a medication called Amicar to help him clot. We later also had ENT come by and they put some foam stuff into his nose, but it seemed to be bleeding further back than the foam reached. It continued through the evening, but then stopped for the night by 10:30. Today his nose has trickled on and off, and he has thrown up blood twice, but not nearly as much as yesterday. We have also been venting his g-tube to try to get it to come out that way. His Defibrotide has been put on hold until there is no more blood coming from his g-tube.

Raul had dialysis yesterday, and had the day off today. His BUN was actually lower this morning than it has been in a long time, which was good. However, we do expect his kidneys to take a hit from the new antifungal meds. As far as the yeast goes, he has not had another positive line culture. The yeast showed that it should be susceptible to the Micafungin he was already on, but since it doesn't seem to be, he is being switched to another medication. He has been having more of the rashes that were attributed to a medication reaction before, but we do not know to what. The timing seems to fit with the anti-fungal, but the doctors are hoping it was the azithromycin that finished yesterday.

His CMV level was a little higher this week than last week, so he is continuing the antiviral med. for that. The BK virus he has could potentially be contributing to his problems with kidney function, but we don't know for sure, and even if we did there is not much that can be done for it so we are just hoping it will clear from his blood on its own (it is more common for it to be in the urine, but he has it in both). It could also cause problems with the bladder, but we aren't seeing those symptoms right now. It is also possible that it is doing nothing, so it is really up in the air!

He is still having fevers, but not as high, which is good! We have had to keep him from eating for a few days to see if that would help his GI symptoms improve, but so far we have not seen a change. Most likely, he will end up having a GI scope this week. He has been doing surprisingly well with not being able to have his yogurt! Raul still has his PICC line now, and we will most likely leave it in for about a week before replacing his Hickman as long as it keeps functioning well. After his busy day yesterday, Raul has rested most of the day today and taken two naps, though he did do a little OT this morning. Hopefully this will help get his energy back! 

WBC:
8.5 (11/14)
6.7 (11/15)
ANC:
5 (11/14)
5.1 (11/15)


Saturday, November 14, 2015

Engraftment Update

We have officially been in the hospital for 60 days now, and are on day +39 after transplant. Raul is quite sick, but the good news is that his cells ARE doing what they are supposed to do! Raul's engraftment numbers came back last week, and his CD15+ is 75% and CD3+ is 100% (those are the percentages of donor cells vs. his cells)! The CD15+ result is normal for low-dose chemotherapy transplants (you would expect it to be 100 in high dose). The fact that the CD3+ is 100% donor means that he currently has complete engraftment of that cell type. These numbers will be checked again at day +60, +90, etc. With the low intensity chemo., many families see these numbers go up or down some. But for now this is great news!

It will be quite a while before we see the full effects of the BMT on Raul's EB. However, we have seen some positive changes in his skin already. Some areas are seeming stronger and more "normal". Some of his large wounds are starting to slowly shrink in size. His worst wounds are the same size, but seem less inflammed and more filled in. Other than getting the blood blisters on his hands (most likely worse from fluid overload), he has no areas that have gotten worse in the past 39 days, which is significant on its own as his wounds had been progressing quite quickly. Despite all the complications he is having, we are optimistic that his transplant is helping! 


Friday, November 13, 2015

Day +38

This morning when we woke up we got the news that the culture from the 11th on the red lumen of Raul's Hickman line was positive for yeast. You don't want to mess around with yeast, so a plan was made to remove the line. Raul was also started on two new antifungals (unfortunately one is hard on the kidneys and the other hard on the liver). This afternoon the line was removed, and amazingly, they were able to get a PICC line in the small strip of good skin on his upper arm! He will get another Hickman placed when we are sure the fungus has cleared.

Raul had dialysis this morning as well, and will again tomorrow since they do not work on Sundays. Unfortunately, with the new medications, there is a chance we will have to go back to daily dialysis temporarily. But right now it is most important to treat the fungal infection.

This afternoon his blood/urine also came back positive for BK virus, another that was dormant in his body, but not something we need to treat. Luckily all the tests on his stool have come back negative! We are going to try not feeding him any formula or food by mouth for about a day and a half to see if his diarrhea improves. If it doesn't, they will be more inclined to do a GI scope. The doctors decided to hold off on the bronchoscopy today as there was no guarantee it would give us the information we needed, and it was not worth risking any possible damage to his airway. 

WBC: 6.4
ANC: 3.3


Thursday, November 12, 2015

Day +37

Raul slept in a bit this morning, and woke up just in time to have his vitals and weight done before the teacher came. He did pretty well with school this morning, though insisted on eating a yogurt midway through (and another yogurt later in the day)! We have been having a LOT of issues getting his yogurt because of issues with his diet orders, but finally today it sounds like it has been resolved and we are free to order it whenever he wants it! He did not have a fever overnight, but spiked again this morning. We are going to try running his formula overnight during the time he is fever-free to try to get at least a little into him.

Today we saw the pulmonary doctor. They want to look further into whether the nodules they see in his lungs could be some type of fungal infection not covered by his Micafungin. They were going to go over all his info. again and then decide whether or not to do a bronchoscopy with lavage to try to identify if there is a specific baceria/fungus/virus. The other thing we are still considering is GVHD of the GI tract, which we may look for if he goes to the OR for the bronchoscopy.

Despite having a 105 fever in the middle of the day, Raul had a pretty good day! He cooperated for school in the morning and OT in the afternoon. For OT he got to play with magnatiles, where he built/demolished houses, did a magnetic puzzle, and sat on a plasma car. During his central line dressing change he sung the nursing aide a verse of the wheels on the bus, and then when the BMT team came in for rounds he sung it again and they danced along for him!

WBC: 5.3
ANC: 3.3

Building his masterpiece

After he started demolishing it, then they all had to use their fire hoses to put out the fire

Day +36

Raul got dialysis yesterday. His numbers had taken a bigger jump up, but they think that was because of how sick he was yesterday. His kidneys were also not happy, as expected, about the Celebrex and Vancomycin. He did get a second day of vanco, but they did not continue the Celebrex. We did 3 hours of dialysis, and did not have to pull any weight off him. The nephrology team came by right as dialysis was starting, so it was interesting because I got to hear the attending explain dialysis and how the machine/process works to the fellow/residents/etc.

Infectious Disease was consulted because of his fevers, but they did not see any obvious reasons. Their suggestion was to do a bronchoscopy if the fevers continue. The eye doctor also came by last night, as CMV can affect the eyes. Raul was not a fan of having his eyes dilated, but he did great, and the doctor said that his eyes looked great!

Raul still had fevers/nausea, but he was not quite as miserable as the day before. He sat up and talked more, and even did PT in the evening. He went "fishing" and then played in his tent for a few minutes. It is hard to make him get up when he doesn't feel well, but he needs to keep up his strength for when he is feeling better! After spiking a second 104+ fever and vomiting quite a bit, Raul ended up sleeping pretty well through the night!

WBC: 7.7
ANC: 4.4







Tuesday, November 10, 2015

Day +34/Day +35

Day +34
Raul had dialysis in the afternoon today. He got platelets in the morning and a blood transfusion during dialysis. This past week we were able to dialysis every other day, which is great! Though when he goes to outpatient dialysis it will likely have to be Monday/Wednesday/Friday/Saturday, as he is not yet able to go two days between dialysis runs and they do not run on Sundays. The good news is that he has been peeing pretty well every day for the past few days!

His fevers had been looking a bit better earlier today, but then he spiked to 104 right before dialysis. He will need to be fever free for at least 48 hours before he can be discharged, so it may be a while yet, but we are hoping they will go away soon! We increased Raul's feeds to 25ml/hr this afternoon. He had been doing well with it, but then at the end of dialysis started vomiting and had major diarrhea.

We had a very rough night due to persistent high fevers and gagging/vomiting. We ended up giving IV tylenol as he could not keep the oral tylenol down and when he has fevers he is always extra nauseated. We stopped his formula, as we were not even having luck getting small volumes of medicine to stay down.

WBC: 5.7
ANC: 2.6

 
Day +35
Today Raul has continued to have high fevers and gagging/vomiting, so we still have his formula off. This morning he got another chest CT, which showed micro-nodules like before, so we are doing another course of Azithromycin in case that is the source of his fevers. His blood cultures have all been negative so far, and his skin does not look infected. He did start to show a rash on his face/neck again today, so I am putting the steroid cream on that and we are just watching it for now.

They did start him back on Vancomycin. It is needed at this point, but unfortunate as it will negatively impact his kidneys. They also gave him a dose of Celebrex to see if it helps the fevers, which is also hard on the kidneys. He did not have dialysis today, but will most likely need it tomorrow. However, if his numbers are only moderately high they will wait until Thursday, as they don't like to run dialysis when the child has high fevers/possible infection. 

It has now been a month since he started dialysis, but his case is still considered to be acute kidney injury/failure. They will repeat an ultrasound at 6-8 weeks and again at 3 months. If those ultrasounds both show shrinking kidneys and his status has not improved, he would then be considered to have chronic kidney failure. We are hopeful that his kidneys will start functioning better soon!

Raul has been pretty miserable, which is hard to see, but I did still see a few smiles today. He has napped twice today, and the rest of the time mostly been sort of half awake. He did talk to the teacher a little this morning, played on his iPad a few times, and tonight was a bit perkier after his medications for his bandage change. He was not happy to have to go downstairs for the CT scan this morning, but it was good to get him out of the room, and we even got to go without the IV pole. 

WBC: 8.6
ANC: 5.6


Sunday, November 8, 2015

Day +33

Raul was up off and on last night due to fevers/nausea, so now this afternoon is having a long nap. No dialysis today, which was nice. We did have to do his central line dressings, but he did really well with them today. He had PT, and got pretty worked up about it beforehand, but ended up doing great. We gave him pain medicine at the beginning, which seemed to help. He was totally exhausted afterwards, his whole body was shaking! 

After his PT/line dressing changes we got to go outside for a few minutes without his pole! He wasn't able to be unhooked for long, but it was so nice not to have to bring everything with us. We went out to the playground for a few minutes and then walked around the hospital a little. He was pretty tired, but it was nice to get some fresh air and get him out of the room! I wanted to make sure we got a chance to get out before the weather gets too cold. Now he is getting his IVIG, which will last about 6 hours since it is his first time getting it. 

WBC: 5.9
ANC: 2.2


Day +32

Raul slept well last night, and rested all day. He is still having high fevers and nausea, though the nausea may be a little better. He got dialysis in the afternoon, but they did not have to pull weight off as his weight was actually lower than it was when his dialysis finished two days ago. He got one nose bleed during dialysis, so they stopped the small amount of heparin that was going in, and another small nose bleed after. 

This morning we found out that Raul's viral test came back positive for CMV now. This is a virus that was dormant in his body before transplant, but was reactivated now that he is immunocompromised. The level was high enough that they will treat the virus. He will get an antiviral, as well as a dose of IVIG. There is a chance that his fevers are from the CMV, so hopefully they will resolve as his viral level goes down! 

I didn't take any pictures today, so here is one from last week when Raul got to go on a walk to the parking garage to check out the cars!

WBC: 5.8
ANC: 3.6

Friday, November 6, 2015

Day +31

About 24 hours after stopping his steroids Raul started spiking fevers and gagging/vomiting again (last night). His temps since have been as high as 104. They restarted one antibiotic and restarted a second nausea medication as well. At this point they do not yet want to put him back on the steroids.

Because of the nausea, Raul had a really rough night last night. He was awake almost all night. Luckily he finally slept for two hours in the early morning, and did take a nap during the day. I am hoping that tonight will be better! 

Surprisingly, his kidneys actually had a good day! He peed almost as much today as he would have peed in a day before transplant. His weight has actually gone down quite a bit from last night to tonight (probably in part due to the fevers burning off some fluid). His BUN and creatinine are still pretty elevated, but we are happy he is peeing and not retaining fluid!

WBC: 4.3
ANC: 3.1


Thursday, November 5, 2015

Day +30

Because they took him off the steroids last night, Raul was also able to stop one of his antibiotics. Another will be stopped tomorrow. And as he is now on day +30 he also got to stop his MMF! He got platelets this morning and blood during dialysis.

We had been hoping to try to skip dialysis today, but ended up doing it in the afternoon. We will hopefully skip tomorrow instead to keep with doing it every other day. His weight had gone up a lot, so they had to pull over 1kg of fluid during dialysis. Luckily we still only had to do a 3 hour run, though!

Raul was super chatty and happy most of today, though tonight his throat seems to be bothering him a bit and his mouth has either some mucus or some of the lining shedding again. He had a really hard time during OT, so we are going to start giving pain medicine before therapies and see if that helps. We are also working on figuring out a pain medicine that he can be discharged with.

WBC: 3.7
ANC: 2.4
Bilirubin: 1.6!

Wednesday, November 4, 2015

Day +29

Raul got the day off from dialysis today. His weight was up, but his labs weren't too bad. We are going to try to skip tomorrow too depending on how he seems in the morning. The doctor doesn't really think we will be able to skip two consecutive days at this point, but we want to try since we are hoping to cut back on the number of dialysis days for when Raul is discharged. We are currently at 5 days a week, but getting down to at least 4 would be ideal. 

Today we increased Raul's formula to 15ml an hour, and so far it is going well. Speech therapy also came by and gave Raul some thickener for his drinks as he was coughing basically every time he took a drink. So far he has not been coughing with the thickener, though he doesn't seem to be a fan of it. 

The official report is back on the skin biopsy, and they said it was not GVHD of the skin. They said there was inflammation that looked like either something viral or a medication reaction. Because of that, the doctors pulled his steroids. Depending on what the issue was, the symptoms may come back. It is also possible that he had GVHD somewhere else, like the stomach. I was a bit sad to give up the steroids since they have made him feel so much better, but of course we don't want him on them if he doesn't have to be as they can increase the infection risk.

School and PT went pretty well today. Raul's bandage change was a bit rough, though. He needed both central line dressings done and his whole body. Despite all his normal meds., as well as a second dose of the pain med. and another anxiety med., he was still quite unhappy. He has gotten to really hate the central line dressing changes, especially because he has some open skin in the areas that needs to be cleaned.

Tuesday, November 3, 2015

Day +28

Today they drew blood to check Raul's engraftment, and we will get those results in a few days! Raul's bilirubin today was down to 2; so close to normal! We still don't have a definitive answer about his biopsy/rash. Today derm. said it looked more viral/medication reaction related to the pathologist, but they were waiting to have one more person review it before saying for sure.

Raul had dialysis early this morning. We only ran for 3 hours, but they drew off about 1kg/2.2lbs of fluid! His kidney labs weren't as bad today as they have been some days, so hopefully we are in a good spot for skipping tomorrow. The past two weeks we have skipped Sundays and Wednesdays, and are planning the same for this week. The hope is that we can skip at least one more day per week before switching to outpatient dialysis!

Yes, I said outpatient! There is a chance Raul could be discharged as early as next week, but we will see how everything progresses. The past two days we have been switching more of his medications over from IV to g-tube in preparation for discharge. He will still have some IV meds. to do outpatient, but hopefully not too many. And the social worker said that if we are doing dialysis outpatient, we most likely won't have to go up to clinic. They will check all his labs down there, and then send down a provider to meet with us in the dialysis center, which would be nice.

Raul had another good day. He did well with school and OT. We even walked outside for a few minutes, but after an issue with his pole tipping we came back in. Luckily now we were able to clear out some of the pumps off his pole since more medicines were switched to oral! Raul took a nap in the afternoon, and is now up playing iPad and chatting away!

WBC: 5
ANC: 3.7


Monday, November 2, 2015

Day +27

Raul had another good day! He cooperated well for school, and was even pretty talkative to the nurses/doctors. He played in his tent again, then when he got tired we turned his bed into a fire station with all his fire truck toys. He didn't fall asleep for a nap until about 3. He also got very excited about ordering a lunch tray for the first time, and got yogurt and juice. He actually ate the whole yogurt! We also increased his formula, but jumped to 7ml this time instead of right to 10ml an hour. His body seems to like the steroids, as he has been almost acting like his normal self since they started!

His kidney function levels had not jumped as high this time as they did last time we skipped a day of dialysis, but his weight increased a lot. His levels may increase again as they had to increase his CSA medication. We only ended up doing 3 hours of dialysis, and will do another 3 hours tomorrow. Then we will hopefully get to skip Wednesday!

Other than his kidneys, Raul is doing well! Still no vomiting or fevers. His Bilirubin is now down to 2.4. He will finish his initial 21 days of Defibrotide later this week, but they will keep him on it until he is discharged. His rash is still looking better. Dermatology came by and said the pathologist did see changes on the biopsy, but that it was not definitive for GVHD. Other pathologists will take a look before they say for sure. The derm. team was also looking though his meds. to see if any could have caused it. Tomorrow they will be drawing blood to check his engraftment, and we will get those results in a few days!

WBC: 3.6
ANC: 2.5





Sunday, November 1, 2015

Day +26

Raul had a good day today! This morning he got down to play in his new fire station tent and was more interactive with his toys than I have seen since before his transplant! He also scooted himself in and out of the tent, and I have not seen him scoot in a long time either. After that he napped for 5 hours, and slept very peacefully. Now that he is feeling a bit better, he is actually sleeping more, we think because he just felt too gross to sleep before. I am glad that he is getting more rest, because then he is more happy when he is awake! After his nap he was even up for one round of a board game, and tonight he was very talkative!

Raul's skin already looks a bit better today from the rash/blisters, but we still have not gotten the results from the biopsy. He is also now on his second day of no fevers and no vomiting! His counts (WBC/ANC) dropped a little more, but the doctors were still very pleased with how high they are. He did need platelets this morning and then blood this afternoon. 

Raul's weight was up today, but his renal labs weren't too bad, so they still let him have the day off from dialysis! After I saw his weight I was worried they would change their minds, as he would have been very upset to not get his day off. They did further restrict some of his fluids and he will definitely get dialysis tomorrow.

WBC: 2.6
ANC: 1.9