Day +99

Today is day +99, and we have been in the hospital 120 days! Raul only needed blood twice in the past week, which is great! He has still needed platelets more often, though. His fevers are about the same. WBC/ANC still within normal range. Bilirubin still high, both direct and total. Because of his bilirubin he had another ultrasound today, which is generally unchanged. His liver and kidneys are still enlarged, and his spleen is borderline. The ultrasound basically just showed chronic problems with his liver and kidneys, but nothing specific that would help explain the high bilirubin. He also had a repeat chest CT yesterday, which was similar to the past ones, and showed some micronodules.

We have stayed at 60 ml/hr for Raul's formula with the baby food green beans mixed in. It is a little hard to tell if that is helping, but I think it is. He is still getting a little dehydrated from the amount of stool, so has been very thirsty! His BUN has been much better the past week, and we are hoping to go to only having to do dialysis three days a week. Today is the first time in three months that we have gone two days without dialysis! We have started weaning Raul's CSA, which will take 8-10 weeks, so hopefully that will help his kidneys too!


Two nights ago Raul's blood pressure stayed low after dialysis, and we just assumed they had pulled too much so he got a fluid bolus, which helped minimally. However, his BP never really rebounded, and has stayed pretty low since last night even without dialysis. Last night he got several fluid boluses, and when that didn't help we added back more antibiotics. Today they were concerned he was septic, though thankfully his BP has not dropped any lower, so if he is it is not as severe as last time. He is also still acting like his normal self.

We did hold off on his +100 day skin biopsies, as we did not want to cause his BP to drop any lower. His engraftment studies were sent off, so hopefully we will know about those at the end of this week or early next week. His low BP also contributed to our decision to skip dialysis today, as his BUN was okay and they likely would not have been able to pull much fluid anyway. His BP has stayed low but stable, though they are considering adding a medicine to raise it anyway even though it is not dangerously low at this point.

We are now trying to get Raul to sit at his table for school

Day +96

This morning when I woke up it was -10 degrees (-28 with windchill), and it has only gotten a little better as the day has gone along! Raul got two passes this week to go out of the hospital. Today we bundled him up and went to visit the fire station, where we got a nice tour. Raul talked to the fire fighters, and even asked them about their axe and radio. His legs were hurting him a lot, but he was glad we went! They invited us to come back any time. He is now napping after his busy morning.

We got up to his full amount of formula a few days ago, but then had to back off a little, though not enough that he would have to go back on TPN. We have also added baby food green beans to his formula to help with his stool. This has been our biggest issue lately, but we are hoping it will improve and we won't have to go back to TPN. It has also made him a bit dehydrated, so we haven't been pulling fluid the past few dialysis runs.

We think his dry weight has likely increased again as well. We are now discussing trying peritoneal dialysis for him, as that would be every night and we would not see such extreme fluid shifts and super high BUNs as we do with doing hemodialysis four days a week. In people without kidney failure, our kidneys are working 24/7, not just 12-16 hours per week! If it worked, this could also be done at home, which would be a huge bonus for when we go back to MA! We are looking at doing the catheter for the peritoneal dialysis next week, as he will have to go to the OR anyway for some day +100 tests.

Raul's labs remain pretty much the same. His bilirubin goes up and down, but isn't going quite as high on the spikes. He is still needing platelets and blood pretty regularly, but can go a couple days in between. WBC/ANC have stayed at good levels and he has not needed GCSF since December 27th. His fevers are still happening 1-2 times a day usually, but not always as high as we had been seeing at his worst. He has been acting much more like himself lately, and been talking a lot more, which is great! We are working on trying to get him out of bed and out of the room more often to help build up his strength. 

Day +93

Tonight's Music Therapy

Day +92

Well Raul's bilirubin is back up a bit, so it seems like it may just bounce around for a while before truly going down. Raul got blood the past four days (though one infusion was stopped soon after starting due to a fever), and thankfully his hemoglobin is finally up to a normal level today! He is now getting EPO three times a week during dialysis, so hopefully that will help keep it up. And his Platelet count only dropped from 26 yesterday to 25 today, which might be a post-transplant record for him! Still a couple fevers a day, but not constant like it used to be. He will also be off TPN as of tonight, which is very exciting!

The past couple days he has been in a pretty good mood and been more talkative. He has been sitting up in bed more often, and worked really hard in PT yesterday. He is back to school after winter break, and not thrilled about that, but he liked that his teacher came back up today to visit Pablo from Backyardigans with us! They had a story time with Pablo in the library, and Raul tired out before the stories, but did get to visit with Pablo (unhooked from his pole even!)!

Day +90

Thankfully Raul's bilirubin is heading back down! It was 7.5 yesterday and 6.3 today. We aren't sure why it went back up or why it is now coming down, but I'm just glad it is coming down! Raul continues to just have 1-2 high fevers a day, and they come down easily with tylenol. This afternoon he had a fever that appears to have come down without even getting tylenol, which hasn't happened in ages! He is definitely feeling better without so many high fevers!

Raul's feeds are up to 55 ml/hr tonight, and his ultimate goal is 70 (though 60/65 could be okay). His TPN has been lowered for tonight, and should be stopped entirely tomorrow. Yesterday they lowered the calories but did not lower the fluids, so today his weight was crazy high since he is now getting over 1,000ml of formula a day too. His weight was up to 19.6 kg, and his dry weight has been 18kg. We are thinking his dry weight may have increased again a little, so we just pulled off 1kg today as he is scheduled for dialysis tomorrow too, and we will see how he does at that weight. In the past when he has gone above 18.6 he has had breathing problems, but amazingly had very few issues this time (breathing a bit fast, and needed a small amount of blow by oxygen briefly overnight). He was definitely puffy, though.

Raul was able to go two days without needing platelets, but was borderline today and got a nosebleed, so he will get them tonight. He had been doing well with fewer blood transfusions, but the past few days he has been very low. His hemoglobin was 6 Saturday when he got blood, then was only just over 7 yesterday morning so they tried to give blood but he spiked a fever so they had to stop it. Because he was only able to get a small amount before his fever, he had to get more today as he was back down to 6.3. Hopefully this time it will last longer! 

Day +88

As you can probably tell from the photos, Raul is more jaundiced. His bilirubin was up to 12.5 yesterday. It may be related to the aHUS, but we are hoping it will improve once we get him off the TPN. His formula is now up to 35 ml/hr, so we are making progress thanks to the GJ tube! He is still throwing up even though we are venting the G portion of his tube, but at least he isn't throwing up his formula or meds. anymore. We also started him on a medication to help his motility from his stomach. Thankfully, his diarrhea has only increased a little even with the formula and the motility medication!

This past week he has gotten two blood transfusions, and three platelet transfusions. This is still a lot, but much better than it had been for a while! I believe we are going to start giving him EPO to help cut down on the blood transfusions, as when you have kidney failure the kidneys do not make it (or do not make enough) on their own. Raul hasn't needed GCSF in a week, which is great! His counts came back as we had hoped when we stopped a few of his antivirals, so now we are going to start one back to help keep down his BK virus levels. Raul's weight was up .8kg today, which was his highest weight since starting dialysis, but we were able to pull all the excess weight off during dialysis.

Raul has been pretty happy and talkative the past couple days, particularly in the morning. It is great to see him act more like himself during these times! He also has been having fewer fevers, which has been amazing, as the high fevers really make him feel crummy. He had a true fever Thursday at 4pm, then not until Friday at 4pm, and then today around 2pm. And thankfully when he does have them they are now going down pretty quickly with the IV tylenol.

Day +87/Happy New Year