Day +25

Raul had dialysis this morning but they did not pull any fluid as his weight was still okay. It also only ran for 3 hours again. His levels are still getting high, but are trending down, which is great! He will get the day off tomorrow. After dialysis he got to see some players from the Gophers hockey team.

Today we stopped his Fentanyl PCA pump as they were running out of line space, so now he will just get doses as needed without the continuous Narcan that was running with the PCA pump to counteract his itching. Because we stopped the Narcan, we now switched his Benadryl back to just as needed doses so that we can use it around the doses of Fentanyl if we need to. If he seems too uncomfortable without the Fentanyl PCA, we can always try to add it back.

The rash on his abdomen already looked more faint today, but his poor face looks rough. He has all these small blisters and it seems itchy. His whole body has been itchy as well, even where there isn't a rash. We should get the GVHD results on Monday. He has not had any fevers in the past 24 hours, which is great news! He also has not thrown up today! He took a long nap in the afternoon, and since then he has been much more awake and more like himself

Day +24

Despite having super swollen hands, Raul actually hadn't gained weight overnight! So he still had dialysis, but they only ran for 3 hours, and did not pull off any extra fluid. He will get dialysis again tomorrow and then hopefully be able to skip Sunday again.

Raul had another high fever this morning, 104.6. His rash on his abdomen was about the same, but his face (and a little on his arms) now has tons of tiny blisters in a somewhat rashy area. Dr. Wagner was up touring some hospital benefactors, so came in to take a peek. He did think it could be GVHD, so Raul had a biopsy on his abdomen to check, and in the meantime they started both IV and topical steroids. If it comes back negative and turns out to be viral, then they can just wean the steroids much sooner. 

They also changed around some of his antibiotics and he will be getting clindamycin instead of vanco, as the bacteria that showed from the line culture was susceptible to that and it is easier on the kidneys! We are still playing around with his nausea and itch medications, as those have been pretty big issues lately. 

I realized I hadn't posted his labs yesterday, so will post both today:
WBC:
3.7 (10/29)
4 (10/30)
ANC:
2.3 (10/29)
2.8 (10/30)

Day +23

Raul's kidney function numbers were quite high today, so he had dialysis as planned. Oddly his weight wasn't too bad. The good news was that he had two good wet diapers during dialysis! His kidneys are still having a very hard time, but the urine is a good sign that they are still at least trying to function when he doesn't have dialysis. 

Raul also had a rash on his belly and a bit on his face today, which could either be from the virus they found yesterday or graft vs. host disease. We are hoping it is viral, but if it was GVHD of the skin it should be easy to manage and would actually be a good sign of his engraftment. His engraftment will be checked around day +30 (next week). 

Today was Halloween at the hospital, but unfortunately Raul wasn't feeling well today. He did put on his policeman costume briefly, and wore a pumpkin shirt the rest of the time. In the middle of the day they had reverse trick or treating where two groups came around to all the doors with treats (balloons and goodie bags). We also briefly checked out a Halloween party downstairs in the afternoon, and Raul got a fire hat there. 

When we came back up from the party we checked his temperature and it was 104.5! He had been pretty nauseas all day, and fevers always seem to make his nausea worse, so he threw up a lot this afternoon/evening. He was super itchy today too, and just generally felt crummy. It is possible the high fever and rash are related, but we don't know for sure.

Day +22

Raul got the day off from dialysis today! His weight was still pretty good for him, and his labs were high but good enough to wait one more day. He will likely need dialysis Thursday-Saturday, and then we can hopefully skip Sunday.

I found out last night that one of his blood cultures from just one lumen the day before had come back positive. Because of this, they gave him one dose of vanco last night. Vanco is pretty tough on the kidneys, and due to his kidney function his vanco level was high after just one dose so he did not get any more today (yesterday's dose is still effective). We had to use vanco as it would be one of the only options if his current antibiotics were not effective against the bacteria. Luckily all cultures done since the positive one was taken are showing as negative, so it may have just been a skin contaminate.

We also found out today that one of his old viruses has been reactivated by the transplant process (the virus that causes roseola), but we do not need to do anything about it at this time. They will check a level weekly to monitor it. If he was to become symptomatic it could cause a fever and rash.

This morning Raul got to see a state trooper and Smokey the Bear. He put on his police hat to see them, and got a goodie bag, which was exciting! He also did well with school this morning. They did a bit of math, some reading, and some matching. He did OT in the afternoon and played a few games, but wasn't too happy about stretching his arms. This evening my mom brought over a huge stack of birthday presents that were from the Ronald McDonald House staff! Raul was very excited to have another set of presents to open!

WBC: 4.3
ANC: 2.8

Day +21

Dialysis came early this morning, so Raul was up in time for the teacher to come. He was pretty grumpy, but she was able to stay for the full hour of school time, at least. In the later afternoon he had PT, and did surprisingly well for having not napped all day!
 

Raul's kidney function levels and weight were not too bad, so unless anything wonky happens, the plan is to skip dialysis tomorrow and go back to it on Thursday. Because the GCSF was stopped Raul's WBC/ANC dropped a little, but they were still at good levels. His bilirubin continues to drop (4.5), which is a good indicator that the VOD is improving! He is about halfway through the initial regimen of the medication for the VOD. After 3 weeks they will reassess.

This afternoon we went to a party downstairs with players from the Vikings and food from Chili's. We got to meet the players, meet some of the hospital therapy dogs, see a magician, and get tons of food to bring back upstairs. When he first saw the person in the cowboy costume he said, "hey, man" haha. He also told the football players that he was 6 and asked how old they were. Later there was also a showing of Hotel Transylvania in the auditorium, but Raul didn't want to watch it so I just grabbed a root beer float and we headed back to the room!

WBC: 4.6
ANC: 2.5

Day +20

Raul slept in this morning, so did not do school. Though we did have to get him up shortly after that to be weighed for dialysis. His kidney function numbers had not jumped quite as high as I thought they might, which was good news. His weight was pretty high, but luckily today they didn't bring him quite as low during dialysis. The best news was that during dialysis he peed! I think he peed more in that one diaper than he had the past week combined! He will have dialysis tomorrow, and then we will decide about Wednesday on Wednesday morning.

His bilirubin went down again (5.7/4.8), and WBC/ANC went up, so all good news! If not for the kidney/liver issues he would probably be being discharged, but given those complications (and his recurring fevers), we likely have at least a couple more weeks inpatient. He is definitely starting to look less yellow, which is good. We re-started his formula today at 5ml an hour to help both his GI system and his liver. They had to stop his lipids last night as his triglycerides got really high, so hopefully we will be able to increase his formula later this week and not even need the lipids added back.

Tonight we went downstairs to a Halloween party where we got to decorate two cupcakes, make a pumpkin craft, and Raul got to pick out a new blanket (with vehicles of course). It was nice to get out of the room, although Raul really doesn't like wearing the mask so that made him a little grumpy. There is another event tomorrow night, so we will probably go down again!

WBC: 8.8
ANC: 6.7

Day +19

No school, dialysis, or full bandage change today, so we had a nice relaxing day! We did have to do both his central line dressings though, as when I went to change his shirt one had come totally off and the other was almost off. His regular line appeared to be moving in and out a bit, so we did another x-ray to check the line placement, and luckily it was okay.

Raul had tried to get up at 6 this morning, but thankfully fell back to sleep a little after 7 and slept for a couple more hours! Mid-morning we went out in the hall for 15 minutes, then when we came back to the room Raul opted to stay in his stroller to play on his iPad for a couple more hours! While he doesn't sit totally straight in his stroller, it is much better than sitting on the bed. Late in the afternoon he slept for a few hours, and is now back sitting up in bed. He is still not really up for playing with his toys often, but does play with his iPad and occasionally his toys. PT tried to get him to play with a toy basketball hoop, but he was not impressed by that (he did do the minimum ten throws).

Today was Raul's last day of GCSF as his ANC has been above 2.5 for three days. His bilirubin today was technically slightly higher, but the team said that because of things like fluid shift they consider it to be the same. The medicine they added yesterday seems to be helping, as he did not have any bloody vomit or bloody noses today! No need for blood or platelets today! I was hoping we might get some pee today since he didn't have dialysis, but that hasn't happened yet. They put in orders today for him to get dialysis tomorrow, and then after that we will see if it stays as daily or not. His weight only raised .1kg from his morning weight to evening weight today, which is great!

WBC: 7.2
ANC: 4
*Both within normal range*

Day +18

Raul had dialysis this morning. They pulled his weight down more than they had planned, but since he will not have dialysis tomorrow I guess that gives him more space to gain weight before it becomes problematic. He got two units of blood during dialysis as his Hemoglobin at the start was down to 6.7. He vomited blood once last night and twice this morning, which likely contributed to it being so low. He also got a bloody nose this morning, but it went away after I held pressure to it for a while. This afternoon he threw up two more times, but now the blood looks old, which is a good sign. It is possible that the blood he is throwing up came from his nose, but we can't tell for sure.

He got platelets last night and will again tonight, but he is also being started on a new medication to make the platelets work better due to the bleeding. It is possible that the bleeding is from the medication for his VOD, but at the moment it is not severe enough for them to want to stop that medication. If the bleeding continues they will have to consider stopping it. His bilirubin was down to 5.8 today, so it is continuing to decrease. His WBC and ANC are looking good, and they are only planning on giving him one more day of GCSF.

WBC: 4.9

ANC: 3.5

Day +17

Last night just as I was about to go to bed Raul gagged and proceeded to throw up quite a bit of old blood. A few hours earlier a good amount of blood had come out around his g-tube. We don't know exactly what it was from, so are watching it, but there hasn't been any more since last night! Since then his voice has been a bit hoarse, and from the way he talks it sounds like the vomiting really irritated his throat. 

This morning at rounds I found out that his chest CT actually did have "microscopic nodules". This could be nothing, but could be infection, so he will get a 5 day course of azithromycin. Tonight he sounds a little junky and has been coughing some in his sleep, but I think that is more related to the irritation from throwing up.

Raul got dialysis again today, but they only took off .2kg of fluid this time. He will have it again tomorrow, and then we will skip Sunday to see how he does. His bilirubin was down again today. Only slightly down from yesterday, but still the lowest it has been in 10 days (6.7/5.8). People who haven't seen him in a few days are starting to say he looks less yellow when they come in, so that is good! 

Raul did a bit better with school this morning than he had the past couple days, though was not interested in doing PT today. His school time got bumped up to 1 hour a day, and I think once he is feeling better he will like it more! We are going to try again for PT on Sunday since he will not have dialysis that day, and hope he is more willing to get up! Late this afternoon integrated therapies came by to visit and help him relax, and he is still asleep four hours later! 

WBC: 3.8
ANC: 2.9

Day +16

Raul finally slept last night, though continued to talk a lot in his sleep. He was still grumpy most of the day, but then suddenly this evening he perked up a lot. He was talking to the nurses and being silly, which was great to see!

His bilirubin was down again today to 6.8/5.8. He is starting to look slightly less yellow already!

Raul got another chest CT this morning due to his persistent fevers. He really doesn't like going down for tests. Luckily they did not see any infection and his lungs looked better than they had on his last CT (when he was needing the high flow oxygen). 

He had dialysis this afternoon because he still isn't peeing (though his numbers are improving and he hasn't been puffy). We only did 3 hours instead of 4, which was nice. He will have it again tomorrow morning as well. He got a blood transfusion during his dialysis and is getting platelets now as he was low even last night and his mouth and his g-tube stoma were starting to bleed quite a bit. 

WBC: 3.6
ANC: 2.4

Day +15

Raul had dialysis again this morning, though they didn't take off much fluid as his weight was still pretty low from yesterday. His blood pressure has been a bit higher, which the doctor said may be a good sign that his body is pulling extra fluid from places it was accumulating back into his veins. They will be deciding day to day on the dialysis, but he needs to start peeing more before he will get a break from it. 

His bilirubin was down again today, which was a great sign that the Defibrotide is working for the VOD! Today his total bilirubin was 7.3, and direct was 6.3. He still has a ways to go before going into the normal range, but he is trending in the right direction! His WBC and ANC also continue to go in the right direction (up), which should help him in recovering from the complications he has had.

We think that the dialysis was filtering out more of his medicines than we thought, and that that is contributing to him not sleeping. He has not slept more than an hour at a time in three days, and yesterday/last night barely slept at all. So this morning he was super exhausted and irritable, but still refusing to sleep. When the doctors rounded we decided to give him a dose of Ativan and he finally slept on and off for the afternoon (talking in his sleep most of the time). I am hoping tonight will be better! 

WBC: 2.5
ANC: 1.5

Day +14

Raul had dialysis this morning and all went well. He will likely have dialysis daily temporarily until he starts making more urine. His weight went down a full kilo/2.2 pounds by the end! We tried to give a blood transfusion during the dialysis, but he spiked a high fever so they stopped it as it could have been a reaction to the blood. He had one good wet diaper during it, and the nephrologist was super excited; said he made her day! Who knew how exciting a wet diaper could be! He dropped off again the rest of the day, but that isn't unexpected since they pulled so much fluid. He had another kidney ultrasound today, but I haven't heard the results yet. 

His bilirubin was finally down today! The doctors expect it will still fluctuate a bit over the next few days, but we were all relieved that he is not continuing to steadily increase. The two bilirubin levels (total and direct) were 12.5 and 10.5 yesterday, and 8.3/7.2 today.

We have completely stopped his formula again to give his gi tract a break. We think he is likely having delayed emptying in his stomach, so the formula was building up all day and making him super nauseated all night. This is a common issue after transplant. We have slept less than an hour at a time the past two nights, so I am hopeful this will help! He actually still threw up and retched a lot today, even without the formula, but hopefully it will improve soon.

He was awake all but a few minutes today, I think in part because he was so nauseated. But he was actually excited to do PT today! He talked about the game he wanted to play all day and kept asking when he could play it. He was telling Nephrology that they could go so he could play, and asking to call on the call button to say he was ready, but unfortunately he had to wait until after dialysis!

WBC: 1.6
ANC: 1.2

Day +13

Today was Raul's 6th birthday! We were up most of the night last night as he was throwing up a lot after we increased his formula, so he was pretty tired today. Luckily he was still excited for his birthday in the morning! 

We did our family presents first, and while we were playing a group of about a dozen doctors and nurses came in to sing happy birthday and give Raul presents/a balloon! We were a little nervous, as he sometimes gets upset about being sung to, but he did great. He was very friendly to the doctors today, and thanked them many times for the presents! We also signed up with Nick Jr.'s Birthday Club for him to get a call from Blaze, which he was very excited about (he also had a Blaze cake)! 

After playing he napped, and then we took him for a walk in the hall! His ANC was over .5 for the third day in a row, so he was allowed out of his room with either a mask or the stroller rain cover. He was apprehensive about going out after being in his room for 3 weeks, but we made a couple loops. We also got to see Vanessa and Anton! 

Raul was exhausted after his busy day, so went to sleep after that and has been napping since! He will most likely have dialysis again tomorrow as he hasn't been peeing much and because they have added more protein to his TPN, which will raise his BUN. He is back up to 10ml an hour for his formula, and I think we will stay at 10ml for a while as long as he tolerates it. His bilirubin was up slightly today, but hopefully that will turn around in the next few days. The doctors continue to be impressed with how good Raul looks/how he is acting!

WBC: 1.3
ANC: 1

Day +12

They came for dialysis bright and early this morning at 7:30, so we had to wake Raul up to weigh him. Thankfully the line worked today and we got all four hours done. We should be able to take tomorrow off, and then if he needs it again they will do it Tuesday. Before dialysis his BUN was 100 and Creatine was 3.05. Tonight his BUN was 33 and Creatine was 1.5, so hopefully he won't shoot back up too quickly! 

Raul got a blood transfusion this morning, as his Hgb was down to 7.5. His mouth has been bleeding a lot this afternoon/evening, and dialysis can eat some of the platelets, so he will be getting platelets later too. 

The attending always calls Raul a "rockstar" when she comes in, and he really is! He is up and doing a lot more than they would expect based on his numbers. He got out of bed for a while this afternoon, but wasn't too interested in doing PT. He did play a little Hyperdash and made some slam dunks in the basketball hoop, though. He almost always wants to sit up while in bed, which is great! 

The only nap he took today was during the second half of the dialysis mid-morning, he stayed awake all afternoon! He felt pretty awful in the afternoon, and threw up several times, but that does seem to be his hardest time of day. We are increasing his formula by 5ml every 12 hours as he tolerates. While he did throw up in the afternoon, it wasn't more times than he already was throwing up before the formula increased, so we kept it going. Tonight he is now up to 15ml an hour, and his goal is 45. We are hoping to get him off TPN as soon as possible since that is hard on the liver!

Today's Counts:
WBC: .7
ANC: .5

Day +11

Today Raul's WBC was .7 and ANC was .6! If his ANC stays above .5 for three consecutive days he will be allowed to go in the hall with a mask. We are hoping that we will be able to go walk around the halls on Monday for his birthday! 

Raul was supposed to get dialysis today, but his line was too sluggish to complete it. The first time they tried it only ran for 15 minutes before alarming, so they put TPA in his line and waited 45 minutes. The second time it lasted 1.5 hours before alarming, and at that point they put in TPA to leave overnight and called it a day. It was supposed to run for 4 hours, so they may try again tomorrow. If not, they will definitely do it on Monday. 

Today his bilirubin was 11 (normal range .2-1.3). His BUN was 132 (normal range 9-22) and his creatinine was 3.76 (normal range .15-.53). We are hoping to see these turn around soon! He also got two platelet transfusions today, one in the morning and one in the evening because his mouth had been bleeding pretty continuously today. He got a partial blood transfusion during the dialysis, but not enough to have made much of a difference in his numbers since they were not able to run it all.

The good news is he had a chest x-ray and his dialysis line is still in the correct position, so hopefully it will work next time we try! It would have been a huge bummer if we had only gotten one use out of the line (with dialysis they have to replace it if it slips at all). The x-ray also showed an improvement in his lungs from the last one, which is great! His breathing sounds and looks good, and he only wore the high flow part of last night.

Day +10

Today Raul's WBC was .3 (yesterday .2 and prior to that either .1 or <.1), so we are starting to get more optimistic that he is truly getting his counts back! He is still far from normal, but is going in the right direction! 

Raul's kidney/liver numbers continue to rise, so the BMT team decided to treat his liver issue as Veno-Occlusive Disorder (VOD). VOD is a clinical diagnosis, but he does have all the signs other than the ultrasound findings. It is a potentially scary diagnosis, but the medication they will use has a pretty high success rate (it is still in the trial phase in the U.S., but widely used in Europe).

He only held onto a little fluid today, but because of starting the VOD medication they will do dialysis tomorrow. The high BUN level he has causes the platelets to not bind together properly, so we want to reduce the BUN to reduce his bleeding risk since the medication for VOD can cause bleeds. The course for the medication will be about 21 days, unless he has any side effects, in which case it can be stopped at any time. The good news is that it can start working in a matter of days, which would be great! 

Despite his kidneys and liver not being very happy, his personality is actually starting to come back! The past two days he has been awake more, and today only took a one hour nap during the day! He was also finally back to smiling and playing actual games on his iPad not just watching videos. He still isn't quite up to playing with his toys and doesn't like to get out of bed, though he ended up sitting in a chair for about an hour this afternoon! So it seems like we are headed in the right direction, and we are hoping the medicine will kick in quickly so he can start feeling better for his birthday (the high levels also make him more itchy and irritable)!

Day +9

Raul's kidney numbers were a little higher today, but Nephrology thought that was actually because he was a little dehydrated yesterday. They expect they may go up for another day or two, and then they should go down. He may not need dialysis again. Raul's bilirubin continues to increase. Today he had a repeat abdominal ultrasound and luckily his kidneys and liver all showed no change from the previous ultrasounds. This is good news, but also leaves us in limbo a bit with the liver issues.

Today we took Raul off the high flow oxygen during the day, and will put him back on for the night. Last night he was pulling it off constantly, so it was a relief to be able to leave it off today. He did great, no problems breathing. 

Raul's hair was continuing to fall out in clumps, and getting everywhere including in his bandages, so we buzzed it this afternoon. He had a few small wounds on his head, so it is a little patchy in spots, but better! His head tends to get super sweaty, so it will probably feel nice to get some air on it.

Raul was much more awake today, and even told his nurse a few of his jokes! He still napped during the day, but not for as long, and when he was awake he was much more talkative and interactive. He was still not happy to have to get up for OT, but he did it!

Semi-smiling

Raul's eyes have gotten very yellow from the high bilirubin

Sleeping comfortably

Day +8

Raul's lost several clumps of hair today, though it is hard to tell since his hair is so thick! I think in the next day or two we will cut it, as right now it is getting everywhere, including in his bandages.

Nephrology did not want to run dialysis today, and actually thought this morning that he was a bit too low on fluids, so he got a fluid bolus. His weight this morning was down quite a bit from the night before, but tonight he was back to similar as last night, which I believe is good in this case!

Tonight the overnight BMT doctor helped explain the continued increase in his creatinine a bit. He drew a graph, and showed that the jump from say, .5 to 1, is significant. But the jump from say, 2 to 3, is not as significant. He thought Raul would most likely continue to go up a bit before we see him go back down.

As far as his liver/bilirubin levels go, today they were going to look more into if any of his meds. or anything were impacting the liver more. His levels have continued to rise, as has his jaundice. But hopefully once the kidney function improves the bilirubin levels will go down as it will be better filtered.

Raul had a few good chunks of time awake today, and was more verbal/feisty than yesterday. No smiles, but he did tell a few people to go away and/or that he didn't like them, which in this case is good since earlier in the week he seemed almost oblivious to all the nurses and doctors around him! We also got him back into clothes today.

He REALLY didn't want to get up for PT, but we got him onto his floor mats for a couple minutes with a remote control car and stacks of cups to knock over. He had both line dressings changed right before PT, so afterwards he really needed a nap!

We weaned both his oxygen and flow rates down today, and he is tolerating that well. Last night he took the high flow cannula off several times and was doing fine when we noticed, so we figured he was ready to start weaning down! In other good news, he had no visible mouth or GI bleeding today (he did get platelets again this morning)! He is still gagging a bit, but it has calmed down some without the blood.

Day +7

No dialysis today. In the morning his numbers were still up a little, but his weight was down, he wasn't puffy, and he was peeing better. In the evening his numbers were higher and he hadn't peed in a while so they gave him a fluid bolus. His weight is only up .2kg, so we will see how he does overnight and they will decide about dialysis for tomorrow in the morning. His bilirubin was even more elevated today, so he was even more jaundiced, but that should hopefully start trending back down soon.

Early in the morning Raul got a platelet transfusion as his PLT count was down to 9 (he normally runs higher than normal, usually between 500-1,000). I was worried that his wounds would bleed a lot during his bandage change, so we had thrombin on hand, but luckily it was not a problem. We are seeing a bit of the temporary improvement in the skin due to chemo (it is anti-inflammatory), so that is nice! He has been having some bleeding in his mouth, throat, etc., due to the mucositis. He is vomiting some, but we are venting his g-tube to help. He may get more platelets overnight tonight.

His breathing has been much more comfortable today now that he has been on high flow for 24 hours. They can now hear good air flow at the bottom of his lungs, which is great. This morning we went down for a chest CT to check for fluid and/or infection, which was quite a project with all his current pumps, monitors, and oxygen! He got to stay in his regular hospital bed to go down, which was nice. Luckily his scan showed no infection and no large areas of fluid. Since his WBC has not come back yet after transplant (still .1), this was the only way to rule out infection.

Raul had the teacher come yesterday and today, and now there is no school for the rest of the week (they follow the local public school calendar). Yesterday he did a little paining on a pumpkin picture, and today he did a bit on a scarecrow picture. Yesterday the teacher showed us a new website where we can find books, and Raul impressed her by knowing all the words in one book and most of the words in a second! He wasn't up to reading today, so she read him Katy and the Big Snow. He gets 30 minutes a day right now, but the teacher said she might bump it up to 60 minutes when he is feeling better.

In the afternoon I noticed that his hair was starting to fall out on his pillow and on the gauze around his high flow cannula. Right now it is just a small amount, but once it really starts coming out we will probably cut his hair. He knew this would happen, and has not been worried about it. He says he will look like Caillou :)

Tonight there was dinner provided at the hospital, so Raul's nurse sat with him for a few minutes while I ran down to grab food. At this point he can't really be left alone, and with the bleeding/vomiting I wouldn't be comfortable with a hospital volunteer, so it was nice to have the nurse be able to sit with him so I could grab dinner!

Day +6

Raul did not have to have dialysis today! His numbers are still elevated, but his weight had not gone up since last night and he had not gotten too puffy. They will decide in the morning if he will need it tomorrow, but the overnight BMT doctor was reassured that his numbers were close to the same tonight as they were this morning. 

Over the past few days Raul has been getting more jaundiced, and today his bilirubin numbers were pretty high, so they ordered another ultrasound. Luckily his liver only showed mild inflammation with normal blood flow. This most likely means that his liver was just impacted by the chemo or the kidney damage, but it will hopefully not be another major issue! They do not need to do anything to treat it at this time. 

Raul's breathing has also been more of an issue today, so we switched him to a high flow nasal cannula. This seems to be keeping him more comfortable with his breathing and keeping his oxygen at a good level. He must be liking the easier breathing, as he doesn't seem to be bothered by the nasal cannula at all! 

This morning Raul's INR was low (as were his PLTs), so he got a vitamin K infusion. His mouth and around his g-tube have been pretty bloody, and he had two episodes of vomiting blood. These issues are not surprising given the lab results, his EB, and the mucositis. This is actually probably the most common issue he is having! His other side effects/complications are less common, so it is a bit unusual for him to be getting them all at once. I am hoping that means that once he recovers from this he will be over the major issues! 

Raul still slept most of the day, but sat up on and off. He seems to be most awake for a while in the morning. He is still not wanting to play, but watched videos on his iPad, and even imitated a Donald Duck laugh (video below)!

Day +5

Today was a pretty low-key day. Raul did not have to have dialysis today, but most likely will tomorrow. He slept most of the day, but got out of bed twice for a few minutes each. The second time was for a few minutes of OT; bowling with stacked trucks as pins! For a while we had him back on blow-by oxygen instead of the nasal cannula, but his levels were pretty low, so we ended up putting back on the nasal cannula so he didn't have to work so hard to breathe. By tonight he had gained back a bit of weight, but still not as high as he was yesterday before dialysis. He is still somewhat jaundiced; even the fluid in his blisters is yellow!

Day +4

Raul got a second double lumen line for dialysis placed yesterday morning. Because of the fluid his eyes could only open a slit, his hands were swollen, belly was swollen, and he has some fluid in his lungs (for the past 24 hours he has needed the nasal cannula to get his o2 high enough). The doctor said she hopes we won't have to do dialysis for long, we just need to get him peeing out more of the fluid on his own. For now his intake has to be restricted so it doesn't keep building up.

Setting up the dialysis took a long time, especially because we were having no luck getting the ecg leads to read. Eventually we got that sorted out, and were able to start. The dialysis took 4 hours, and at the end his weight was down 1kg! That is 2.2 pounds! His abdomen and face are much less swollen, and his hands are less swollen but will take longer to go down because of his bandages. He is still working harder than normal to breathe, but it is better than it was yesterday morning, and we have started turning his oxygen down. Hopefully he will start peeing more so that we won't have to do this for too long!

Day +3

Raul slept most of the day, which I am thankful for as he feels awful when awake. He has sat up for about 20 minutes at a time a few times today, but has been asleep most of the time other than that. He even slept through his ultrasounds and most of his central line dressing change (photo from after that below). The mucositis is still awful, so he is using his PCA pump when awake. As of last night he is requiring blow-by oxygen while asleep, as his o2 sats drop to 90/91 without it. His numbers are fine while awake. 

His biggest issue now is his kidney function. His labs have been checked twice today, and his kidney function continues to worsen. This morning Nephrology was consulted, and Raul also had a CVP test, kidney ultrasounds, and a chest x-ray. The CVP was normal. The chest x-ray showed a bit of fluid, which would help explain his low oxygen. His kidney ultrasounds showed inflammation, but did not show collapsing of the vessels (which means the kidneys aren't too dry). His eyes and skin are also looking a bit yellow, but I don't know if that is because of his kidneys or liver.

His TPN was stopped and switched to IV fluids to help the kidneys, and his CSA was changed to a continuous drip as it is harder on the kidneys in regular doses. The Nephrologist described this as an acute kidney injury, and it most likely occurred due to being on several medications that are hard on the kidneys (he was on Vancoymcin prior to transplant, was on Celebrex until yesterday, and then has to be on the CSA). He has been tentatively scheduled for a line placement tomorrow in preparation for the need for dialysis. There is nothing to help the kidney inflammation other than time, but his body may require help filtering while his kidneys heal. They will decide for sure tomorrow morning after his labs tonight and early tomorrow.

While his kidney function tests prior to transplant were normal, severe RDEB can affect the kidneys, so they assume his kidneys were most likely affected by EB prior to transplant. In past protocols nearly 100% of EB patients required dialysis, but that number has lowered greatly with the current regimen since they are using less chemo.

Day +2

I don't have any photos from today, so am posting a video from the week before his chemo started. This is Raul's most recent favorite joke. "What train has a cold?" "Ah ah ah ahchoo choo train"

The mucositis is really awful. He has shed most of the lining of his mouth, and presumably his throat as well as that hurt before his mouth did. It is also causing some upper airway inflammation and congestion. He seemed to be handling his saliva a bit better today, but can't really talk. He now has a Fentanyl PCA pump to use for the pain, and we are going to try to put some sort of artificial saliva product on his tongue as it is getting pretty dried out in the front.

Today his kidney function was mildly decreased, so they changed around some of his meds. in order to discontinue or decrease those that are hard on the kidneys. His weight was up about 1kg since yesterday, but they didn't want to stress his kidneys more by flushing out too much of the fluid, so he hasn't gotten as much Lasix today.

The good news is he hasn't had diarrhea in two days, did not vomit today (and only gagged after his morning meds.), and his highest fever was in the 101s! Most of his meds. have been switched over to IV, so his IV pole has gotten quite full (they had to put the PCA pump on the back), but I'm hoping soon he will be able to tolerate more in his stomach again! He still slept most of the day, but sat up on and off to play on his iPad and for a few minutes with the teacher. 

Day +1

Raul had a rough day. He seems to have started to have mucositis, so is having trouble talking and swallowing. The amount of saliva/mucus is also making him gag/vomit more, so we are venting his g-tube other than when giving meds. and using suction for his mouth when he gets too much mucus. While sleeping he has had times of breathing fast and retracting/nasal flaring, but his oxygen has remained good, so we are just watching it. The doctor tonight thought it sounded more like upper airway inflammation (from the mucositis) than the lungs, so if it gets worse we can try steroids. We are also going to give him a dose of pain medicine as the mucositis can be quite painful. 

He is still having fevers on and off, as well as high blood pressure, and his eyes are bloodshot from all the gagging. His face and hands got super red last night, but they are finally looking more normal this evening. He has gotten lasix several times today, as he got so much fluid yesterday with the transplant. 

Raul slept a lot again today, but did get up briefly for PT and we got to see some smiles (he got to shoot an air rocket at paper cup towers!). He also met his teacher this morning, and impressed her with his beginning reading skills! I think he will like having "school" once he is feeling a bit better. He also got a new truck book from the lady that brings around books.

Day 0

After three weeks in the hospital, today was transplant day! Hard to believe we are finally here since we have been looking into the BMT since before Raul even came to the U.S.!

Raul had a high fever this morning, and on and off throughout the day. He vomited a lot when he woke up, so they switched more of his meds. over to IV and are giving a scheduled nausea med. as well as the as needed doses. His WBC this morning was down to .1.

Child life decorated Raul's room with streamers in his favorite color. He got several presents, but you could tell he really felt awful as he didn't get as excited as he normally would. No one knew a time for his transplant, so we just played and napped until the cells arrived!

His transplant started at 12:30, and lasted until just after 3pm. He had a huge bag of cells, which apparently was only half of what was sent over. The rest will be saved in case he were to need a boost later on. Raul requested to give his "red medicine" a kiss before it started! He didn't have any issues with the transplant, but pretty much slept the rest of the day after it started.

Tonight at 7pm he got a bag of MSC cells, which were from a different donor, and that infusion only lasted about 15 minutes. The odd thing about that one is that it gives off a smell like creamed corn from the preservatives. I didn't notice the smell at first, but then it became pretty strong and I can still smell it anytime I am next to him! That infusion made his face and hands super red, but he had no other side effects. He was awake during this one and stayed awake for a little while afterwards watching a movie and playing on his iPad, but tired pretty quickly. With this infusion he had to have his vitals taken every 15 minutes for two hours.