tag:blogger.com,1999:blog-34417899819215588862024-03-04T20:08:58.686-08:00My Romanian ButterflyCarolinehttp://www.blogger.com/profile/03145512962304387220noreply@blogger.comBlogger572125tag:blogger.com,1999:blog-3441789981921558886.post-48541614382371943172016-09-17T19:59:00.001-07:002016-09-18T07:23:31.338-07:00The Raul Binkeez<div class="separator" style="clear: both; text-align: center;">
Today a new blanket was dedicated to Raul; each of the patterns that
Binkeez uses is dedicated to someone. We had been hoping a new car/truck
fabric would come available, and recently it did! At the beginning of
the book launch event two new blankets were dedicated, and Raul's was
one of them. Susan gave a very kind speech, and then had me come up to
be presented with the blanket by the Binkeez volunteers. It is their
tradition when giving a parent a blanket to wrap it around their
shoulders. My dad was able to get a video of part of the speech, as well
as some photos:</div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com1tag:blogger.com,1999:blog-3441789981921558886.post-12729199283336594172016-09-17T19:16:00.000-07:002016-09-18T07:23:59.459-07:00The ABC's of Love Book Launch<div style="text-align: center;">
Soon after we came home I was asked if Raul could be part of a book that a friend was writing. This friend was Susan Posterro, the founder of Binkeez for Comfort, who we had met several years earlier through another charity. Susan wrote a wonderful story of love and kindness, featuring an alphabet where each letter represented a different child she had come to know through her work. Raul was to be letter 'R'! <br />
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Today was the book launch for her book, The ABC's of Love. The day started with a reception for the families at the Binkeez headquarters. Susan wanted all the families to be able to have time to see the books and their child's illustration before the main event. It was nice to be able to see their work space and learn about the organization and how they make the Binkeez. I was also able to spot both the new blanket being dedicated to Raul, as well as the one used for the program at the UofM for EB children undergoing transplant, which we had gotten started earlier in the year. There was profile of the MN program with Raul's photo in the annual report, as well! We also got to meet some of the other families, which was nice.<br />
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Then we headed to the library for the book launch. We were able to meet some of the Binkeez volunteers, as well as the publisher, editor, and illustrator of the book. One of the first parts of this even was two new blanket dedications, one of which was Raul's! There were several speeches and introductions, and it was great to hear more of the story behind both the organization and the book. Then the editor read the book, and it was fun to hear it for the first time. <br /><br />To purchase the book, go here:<br />http://www.binkeezswaddle.com/collections/abcs-of-love/products/the-abcs-of-love-a-love-story</div>
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This dinosaur fabric will be used for blankets that will go to MN</div>
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Finished products packaged and ready for MN!</div>
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The Raul binkeez are on the top left</div>
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Raul's illustration</div>
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Cookie with an image of the book cover</div>
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The annual report page about the MN program</div>
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Library displays</div>
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Raul's page!</div>
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Reading of Raul's page</div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-90433621681868538762016-05-28T19:49:00.002-07:002016-05-28T19:49:41.744-07:00Raul's Butterfly Release <div style="text-align: center;">
At the end of Raul's graveside service we had a butterfly release. The company schedules them to be delivered the day before, so it was bit nerve-wracking making sure they were okay until the release! I did release one yesterday onto the red plant we bought for the cemetery, and it actually was still there this morning. Today when we released them they had warmed up more, so many did fly off immediately. Others hung around for a bit, and we tried to move them onto flowers. </div>
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<br />Carolinehttp://www.blogger.com/profile/03145512962304387220noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-14272959559402746872016-05-28T19:49:00.001-07:002016-05-28T19:49:29.582-07:00Raul's Graveside Service<div style="margin: 0.1pt 0in; text-align: center;">
<span style="font-size: small;">Today was Raul's graveside service and burial. My mom read an introduction/told stories about Raul, my dad and brother in law read poems, my sister read an excerpt from the Velveteen rabbit, one of my grandmothers spoke, and I read a poem during the butterfly release. I had chosen the poems and excerpt before Raul's Minnesota service, and we used them for both services. We also showed his memorial video back at our house after the service. <br /><br />We got lucky to have a beautiful sunny day, as the forecast had been showing the possibility of rain/thunder as recently as late yesterday. We had been hoping for a fire engine red casket, but based on the catalog photo we thought it might be a darker red. We were very happy to arrive and find a bright fire engine red casket! On Friday we had also dropped off a truck blanket, little lovey blanket, and a few trucks to go in Raul's casket.<br /><br /> Because it is Memorial Day weekend, the cemetery had placed special flags on all the graves for firefighters, and this morning the man who runs the cemetery placed one by Raul's grave as well. We were very touched when we arrived to find this. Raul would be pleased, as he is buried in a cemetery with many firefighters! </span>
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<div style="margin: 0.1pt 0in;">
<span style="font-size: small;">"To
the living, I am gone.<br />
To the sorrowful, I will never return.<br />
To the angry, I was cheated,<br />
But to the happy, I am at peace,<br />
And to the faithful, I have never left.<br />
I cannot be seen, but I can be heard.<br />
So as you stand upon a shore, gazing at a beautiful sea β remember me.<br />
As you look in awe at a mighty forest and its grand majesty β remember me.<br />
As you look upon a flower and admire its simplicity β remember me.<br />
Remember me in your heart, your thoughts, your memories of the times we loved,<br />
the times we cried, the times we fought, the times we laughed.<br />
For if you always think of me, I will never be gone."<br />
Margaret Mead</span>
<span style="font-size: small;"><br />
"Don't think of him as gone away <br />
his journey's just begun,<br />
life holds so many facets <br />
this earth is only one.<br />
Just think of him as resting<br />
from the sorrows and the tears<br />
in a place of warmth and comfort<br />
where there are no days and years.<br />
Think how he must be wishing<br />
that we could know today<br />
how nothing but our sadness<br />
can really pass away.<br />
And think of him as living<br />
in the hearts of those he touched...<br />
for nothing loved is ever lost <br />
and he was loved so much."</span></div>
<span style="font-size: small;">
</span><div style="margin: 0.1pt 0in;">
<span style="font-size: small;">Ellen
Brenneman</span></div>
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<br />
βThe Skin Horse had lived longer in the nursery than any of the others. He was
so old that his brown coat was bald in patches and showed the seams underneath,
and most of the hairs in his tail had been pulled out to string bead necklaces.
He was wise, for he had seen a long succession of mechanical toys arrive to
boast and swagger, and by-and-by break their mainsprings and pass away, and he
knew that they were only toys, and would never turn into anything else. For
nursery magic is very strange and wonderful, and only those playthings that are
old and wise and experienced like the Skin Horse understand all about it. <br />
<br />
"What is REAL?" asked the Rabbit one day, when they were lying side
by side near the nursery fender, before Nana came to tidy the room. "Does
it mean having things that buzz inside you and a stick-out handle?" <br />
<br />
"Real isn't how you are made," said the Skin Horse. "It's a
thing that happens to you. When a child loves you for a long, long time, not
just to play with, but REALLY loves you, then you become Real." <br />
<br />
"Does it hurt?" asked the Rabbit. <br />
<br />
"Sometimes," said the Skin Horse, for he was always truthful.
"When you are Real you don't mind being hurt." <br />
<br />
"Does it happen all at once, like being wound up," he asked, "or
bit by bit?" <br />
<br />
"It doesn't happen all at once," said the Skin Horse. "You
become. It takes a long time. That's why it doesn't happen often to people who
break easily, or have sharp edges, or who have to be carefully kept. Generally,
by the time you are Real, most of your hair has been loved off, and your eyes
drop out and you get loose in the joints and very shabby. But these things
don't matter at all, because once you are Real you can't be ugly, except to
people who don't understand." <br />
<br />
"I suppose you are real?" said the Rabbit. And then he wished he had
not said it, for he thought the Skin Horse might be sensitive. But the Skin
Horse only smiled. <br />
<br />
"The Boy's Uncle made me Real," he said. "That was a great many
years ago; but once you are Real you can't become unreal again. It lasts for
always.'" </span>
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Carolinehttp://www.blogger.com/profile/03145512962304387220noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-18704147481449062042016-05-17T05:49:00.001-07:002016-05-17T07:25:16.307-07:00One Week<div style="text-align: center;">
Today
marks one week since Raul passed away. Last Monday at around 7:20pm
Raul passed away, and today at that time there was a beautiful sunset
over the ocean. Earlier today we visited the cemetery and the MA funeral
home. Raul's grave will be the second from the woods, as the back one
was pre-purchased by someone for future use (so for now there won't be
anyone behind him). Across the cemetery you can see the police memorial
garden, which I'm sure Raul would like! </div>
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Not much news from the
funeral home other than that the MN funeral home put an incorrect date
of death, which will have to be sorted out! We also will not be able to
see him again, unfortunately, so we are very glad we pushed to see him
in MN and spent some time with him then! The lady also confirmed that Raul arrived from MN late last Friday night, and was brought to Rockport Saturday morning. When we got in the car to
leave, one of the songs from his memorial video was playing on the radio.</div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-32434513053012941682016-05-15T17:28:00.000-07:002016-05-15T17:37:41.951-07:00MN Memorial Service Photos<div style="text-align: center;">
<span data-offset-key="1ie85-0-0"><span data-text="true">Here is a sampling of photos from Raul's MN memorial service. It was nice to spend some final moments with many of the people who loved and cared for Raul over the final eight months of his life. The memories and cards from those who attended are things I will always hold dear, and they are tucked into his memory box with his ceramic hand print. </span></span></div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-58825900852322581532016-05-15T07:53:00.001-07:002016-05-15T07:53:13.733-07:00Travel Home<div class="separator" style="clear: both; text-align: center;">
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Over our last few days in MN we made lots of arrangements both in MN/MA, planned Raul's MN service, packed up his hospital room and our RMH room, visited Raul at the MN funeral home, and made a quick visit to Minnehaha falls (somewhere we had been meaning to visit since we arrived in MN). <br /><br /> We arrived home to Boston around 6:30pm last night. We actually flew over the
hospital as we were taking off from Minneapolis. It was strange leaving
MN after being there just over eight months, and to be flying without
Raul for the first time in five years. Raul arrived in MA early yesterday
morning, so I was glad not to be leaving him behind in MN. <br /><br />Today we will drive up to Rockport, and tomorrow we will meet with the
funeral home there and with someone to look at plots in the cemetery. We
will be having a family graveside service in a couple weeks. <br /><br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-35769695556968620012016-05-13T15:24:00.003-07:002016-05-13T15:24:52.457-07:00Raul's MN memorial Service<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/uNI_OPu1yMM/0.jpg" src="https://www.youtube.com/embed/uNI_OPu1yMM?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<br />This morning we visited Raul as a family in the morning, then had a memorial service at the hospital in the afternoon. We are so thankful to all the staff who loved and cared for Raul these past 8 months, and were glad to get to see them one last time before going home. <br /><br />During the service we read two poems, a story excerpt, and one of Raul's nurses spoke. We ended with a slideshow, which I attached here! <br /><br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com1tag:blogger.com,1999:blog-3441789981921558886.post-72058144842224056202016-05-10T15:08:00.002-07:002016-05-12T07:27:27.527-07:00Day +216<div style="text-align: center;">
Last night at about 7:20pm, Raul passed away peacefully in my arms, with his grandma by his side. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Just a few hours earlier we had met with his doctors and were switching
over to hospice care, but when he passed we had not yet changed much
other than his code status. I think he just needed to know it was okay
to go. We had expected to have several days to a week with him after
stopping dialysis, but as usual, Raul had other plans and never even
missed a day of dialysis. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Raul<span class="text_exposed_show">'s
transplant was a success, his skin was improving, but as anyone
familiar with his story knows, he had many complications and other
medical issues. </span></div>
<div style="text-align: center;">
<br /></div>
<div class="text_exposed_show">
<div style="text-align: center;">
Raul
fought amazingly hard over the past 8 months, but his body was tired. In
the end he passed peacefully with no pain, his heart just stopped. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
"If love could have saved you, you would have lived forever"</div>
<div style="text-align: center;">
</div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com12tag:blogger.com,1999:blog-3441789981921558886.post-23038154303722689022016-05-05T20:04:00.003-07:002016-05-05T20:04:36.663-07:00Day +212<div style="text-align: center;">
Raul has had a pretty hard week, but he enjoyed getting out in the
sun this afternoon for some fresh air. He was very relaxed, even when we
came back <span class="text_exposed_show">in. It has also been a week
since he got agitated, which is great! And possibly the most exciting
news is that he is finally weaned off his Fentanyl drip, which means he
can be disconnected from his pole for most of the day! </span></div>
<div style="text-align: center;">
<br /></div>
<div class="text_exposed_show">
<div style="text-align: center;">
Unfortunately, medically things have been even more complicated. He
currently has one respiratory virus, parainfluenza, which we checked for
after a long night of coughing at the beginning of the week. He also
has two viruses showing in his blood, both CMV and adenovirus. He
started an antiviral for these last week, and his numbers were even
higher this week, so we switched to a trial antiviral that they have had
a lot of success with. He will get the new medication twice a week. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
His inflammatory markers this week were mostly stable. We had hoped to
see them going down with the chemo, but we are still glad they are not
going up. They wanted to try this med. for about three weeks, so we
still have another week of it, and we increased the dose at the end of
last week. We will meet Monday to discuss what to do if this chemo is
not successful in treating the HLH. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
The pressure sore on Raul's
head is one of his most concerning issues. It has worsened, so we are
now trying vinegar soaks and applying Silvadene. This wound has a
bacteria that is really only susceptible to one antibiotic, so it would
be very dangerous for it to get into his bloodstream. If the wound
continues to get deeper, this would become more likely. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
One of
his other scarier issues is his gagging/choking. This week he has had
several episodes where he has gagged and dropped his oxygen sats, or
looked like he was choking, but thankfully he has not actually choked or
turned blue. Sometimes he vomits a little, but it is usually more of a
gag. Luckily these episodes are usually very quick, but they are still
scary for him and us.</div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-5298029169897758262016-05-01T18:09:00.002-07:002016-05-01T18:09:32.649-07:00Day +208<div style="text-align: center;">
We got outside again this afternoon, which was really nice! Raul
enjoyed watching the traffic and snoozing in the sun. He had a good
weekend, after a rougher day Friday. After dialysis on Friday Raul had
reflux/vomited into his mouth, and had trouble clearing it. He did not
stop breathing, but did turn dusky/blue-ish for at least several
minutes. We suctioned some out, and eventually it passed. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
After that he got very agitated from everything going on, and as usual h<span class="text_exposed_show">is
breathing acted up. The doctors ended up calling both a staff assist
and a rapid response to get more eyes on him. After increasing his
oxygen, getting several sedatives, and all the extra people clearing out
of the room, he was finally able to calm back down. There was talk
about him going to the PICU, but thankfully he didn't have to. </span></div>
<div style="text-align: center;">
<br /></div>
<div class="text_exposed_show" style="text-align: center;">
Later that evening he started having low blood pressures, and another
high fever (104.5 Friday, 105 Saturday), so they added an antibiotic and
put him on a blood pressure medication for several hours. Today they
took that antibiotic back off as he has been doing better and they want
to save it for when we really need it, as some of his bacteria is very
resistant to antibiotics.<br />
<br />
We have also stopped putting the
topical antibiotic on the spot on his head that was biopsied, as it was
fairly resistant to them anyway. This spot had several types of
bacteria, and the pathologist found it to be a pressure ulcer. Last
night we changed his mattress to an air mattress to try to help with
pressure spots, and we are working on getting a better moldable pillow
for his head. We will also be consulting an orthotist on possibilities
to help keep his elbows from constantly pressing into the bed as those
areas have worsened significantly.<br />
<br />
Last week Raul tested
positive for adenovirus, so began a medication for that. We will be
switching it this week though, as we got approval to use a trial
medication instead that has had very positive results. This medication
will also be less hard on his organs than the one he started on.<br />
<br />
Raul has now had seven doses of the Ruxolitinib for his inflammatory
issues/possible HLH. His inflammatory markers will be checked tomorrow
and should all be back by mid-week. Despite the higher fevers at the end
of the week, this weekend he has had very few fevers! The team
increased his dose from 5mg to 10mg on Friday. He has still managed not
to have worsening platelet levels as a side effect, and has continued to
get platelets once daily (and red cells every few days).<br />
<br />
We had
almost weaned off Raul's Fentanyl drip, but then they realized that the
end of the wean had been a bit fast for how long he had been on it, so
they increased the dose a little bit at the end of the week. He should
be off it this coming week instead, which will mean no more continuous
drips! His med. schedule is surprisingly uncomplicated for how
complicated his issues are!<br />
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-74098097801142389092016-04-28T15:30:00.000-07:002016-04-28T15:30:17.170-07:00Day +205<div style="text-align: center;">
Today was Super Hero Day at the hospital (and also mom's birthday)! It was fun to see all the staff dressed up, and we took Raul down to the super hero party in the afternoon. It was a little overwhelming, but he didn't get upset. We get to see our super hero every day, but it was fun to have a special event to go to today! </div>
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<br /><br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-82242781571370137032016-04-25T17:57:00.000-07:002016-04-25T17:57:31.153-07:00Day +203<div style="text-align: center;">
Today Raul got his third dose of Ruxolitinib; he only gets it on dialysis days. We drew his normal Sunday/Monday labs, but the IL2 and the cytokines take a few days to get results. His other inflammatory markers were still incredibly high, but we would not expect to see a change in his labs if the medicine is successful for about a week. So far we have not seen the even bigger drop in platelets that we thought we might with this medication, which is good. He has just gotten them once a day the past few days. We were able to go outside Saturday without Raul's IV pole!
Unfortunately now it is supposed to rain for a week, but we are looking
forward to getting back out.</div>
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I would say Raul's fevers are happening less frequently, though still daily. Unfortunately, he has now had his second positive blood culture from his PICC line. The first grew staph, and he has been getting vanco for that, so we added Linezolid now too. We have also started getting the reports back from where a spot on his head was biopsied, and so far it has several types of bacteria. He is already on so many antibiotics, that it doesn't really sound like we will do much different for it. Raul did also have another episode of severe bleeding from his arm, about 200ml, so they are re-checking one of his clotting factors to make sure it is okay. We noticed it a bit quicker this time, I think, and we held pressure and put on an absorbable hemostat layer under his bandage. </div>
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We began weaning Raul's CSA a couple weeks ago, and should be done on 5/13. This is the immunosuppressant he has been on since transplant. We first started weaning it around day +100, but then he was diagnosed with HLH so they put it back on for a while. It will be nice to get him off that so he has a better immune system! </div>
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Neurology was supposed to come by last week, but ended up only stopping by the doctors' room as they did not have anything to add at this point. He is still having fevers and still on a fentantyl drip, so he couldn't be fully assessed. Despite his fairly normal MRI, he is currently presenting as being severely affected by his cardiac arrest. We are happy though that he is no longer miserable and agitated! He has also been more alert since we have been weaning the sedation. He should be off his remaining sedative drip by the end of the week. There is still a chance of improvement, and we are hoping we will start getting smiles again soon if the new medication helps him feel better overall!</div>
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Due to some of his labs and symptoms endocrinology had recommended the team check Raul's thyroid. They expected the level to be high, but it actually came back slightly low. They will give him just a small dose of a medication to help this. Raul has also been having some GI trouble, which may have contributed to some dehydration, but since putting him back on scheduled immodium and adding fiber back to his formula that has started to improve.</div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-30101004586277989622016-04-22T17:47:00.001-07:002016-04-22T17:47:09.424-07:00Day +199<div style="text-align: center;">
I have been pretty sick this week, so my mom spent the past couple nights at the hospital with Raul so that I could recuperate. I guess I have been lucky to make it 7 months without catching anything, but I got hit pretty hard this time. Thankfully after some rest, and now some antibiotics for my sinuses, I am starting to feel better! </div>
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A lot of this week was spent getting approval for Raul's new medication, Ruxolitinib, and then actually acquiring it from the company. It arrived yesterday, but then we had to wait to give it today as it is to be given on dialysis days. He also had to get some extra lab work and an EKG as part of the protocol for this medication. Earlier in the week we got back the results for his cytokines, and two were high, so they will monitor those to see if the medicine is helping. The medicine is a chemotherapy, but a long term one, so if it helps he would continue taking it. We had to apply to the company for compassionate use, as we are using it for an off label diagnosis. His diagnosis is still not straightforward, it may be HLH or it may be something similar. </div>
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As Dr. Tolar said today, nothing is straightforward with Raul, "his EB is a little different, his VOD was a little different, his HLH is a little different", etc. We are discussing the possibility of whole exome sequencing to look for genetic causes for his issues, as we did not find an HLH specific mutation. Raul did have unexplained fevers and inflammation on and off over the past several years, so it is possible he had this inflammatory condition before transplant. </div>
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Today Raul also got two punch biopsies and cultures of a spot behind his head. The doctors weren't too concerned, but it has been looking really off, and no one knew what it was so we wanted to make sure there wasn't anything else we should be treating! As always, he was tough, and it really didn't seem to bother him. We have also been having issues with wounds bleeding through his bandages here and there, but nothing overly concerning since the big bleed from his arm last week. </div>
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Raul is almost off his sedation! His Ketamine will be turned off tomorrow, though he will still have lots of PRN doses available if he needs them. His Fentanyl has to be weaned more slowly to avoid withdrawl, but we are making good progress there too. He has definitely been more alert the past few days, and we are hoping that once he starts to feel better he will show us some smiles again! </div>
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A few days ago Raul had one positive blood culture from one of the lumens on his PICC line, so got a dose of Vanco. We also narrowly avoided having to have his dialysis line replaced! The regular clamp broke off last Saturday, so they put something else on instead. It worked okay for dialysis Monday, but by Monday night all the TPA was gone from the line and replaced with air. They were concerned that it might be cracked so put him on the OR schedule for Tuesday, and used a big blue clamp overnight. The dialysis nurse came to check it Tuesday morning and thankfully agreed it was a clamp problem and put a second one to make sure it stays tight, so the team was able to cancel his OR slot! We are still aiming to switch to PD eventually, so it would be nice not to have to change out his HD line in the meantime!</div>
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It has been great to have Dr. Tolar on service this past week since he knows Raul and his condition the best! He does tend to be very optimistic, but we were still relieved to hear that, from his perspective, we are not at the point of end of life care yet. Raul's issues may not all be curable, but we are not out of treatment options yet. This was a refreshing opinion to hear! The new medicine we started is not just for comfort care, the goal is for it to actually treat his condition. He says he is stubborn, and we know Raul is too, so they make a good team! </div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com2tag:blogger.com,1999:blog-3441789981921558886.post-80023794973923358352016-04-17T13:35:00.000-07:002016-04-17T13:35:07.226-07:00Day +194<div style="text-align: center;">
Yesterday marked seven months inpatient here in MN! Raul continues to have fevers, though went quite a while during the day yesterday without one. We re-started him on cipro, as his BK viral level had increased. His sodium has been quite high, so Endocrinology had us increase the amount of water he gets with his formula and also recommended checking his thyroid. They said he does not have diabetes insipidus, which had been questioned due to potential neurological damage from his cardiac arrest. Since adding the increased water his sodium has been in normal range. We will be seeing neurology again this week, though I'm not sure how much more they will have to add at this point. <br /><br />Friday we stopped dialysis at three hours instead of four, as he got really agitated. When he gets agitated his breathing gets labored, and they tend to check lactic acid and blood gasses during that time. His lactic acid has been high, but everything else has been decent. I think the consensus is that when he gets agitated he breathes fast, which raises his lactic acid, then because of kidney failure he can't clear it as quickly as someone else would. Yesterday we only stopped dialysis 13 minutes early for agitation, and he was actually .1kg below his normal dry weight, so it turned out to be good we stopped! <br /><br />The past few nights Raul has slept better, after being awake most of Thursday night (not agitated, just awake). He has been sleeping in pretty late in the morning too. Last night as we were getting ready for bed he gave us a bit of a scare. The lights were already off, but I noticed his arm bandage was bloody when I had just changed it earlier that day, so I turned them back on to check what was bleeding. With the lights on I could see that he was in a fairly large puddle of blood that had come from his upper arm wound. The nurse and doctor came in and we got the spot to stop bleeding by holding pressure, then putting thrombin powder on it as well before re-bandaging. It was a tiny spot that was bleeding, but bled a ton (5-6 ounces). Thankfully he had just gotten a blood transfusion, and was getting platelets at the time. This morning Dr. Tolar asked me some questions about the spot, and he thinks it is likely a vein, so if it happens again we will do a dye study through his PICC line. For now we will just check that spot frequently to make sure it isn't bleeding again! <br /><br />We are looking into one specific medication now to hopefully help Raul's "extreme" inflammation in his body. The medication is intended for two different conditions, so a panel at the company will have to decide if it is appropriate for Raul. Dr. Tolar hasn't used it for EB patients before, but successfully used it recently for a patient with a different condition. We would hopefully be able to get it in the next week, but I am not sure how quickly they would expect to see a change. </div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-31848739619046623022016-04-14T19:28:00.000-07:002016-04-14T19:30:14.393-07:00Day +191<div style="text-align: center;">
The past two afternoons the weather has been great, and Raul has enjoyed spending some time outside! Today we found a good spot where he could watch the road and he actually stayed awake the whole time and seemed to be watching all the vehicles. We also declared him to be the greeter for the hospital, as we were out front and he had lots of people saying hi to him! <br />
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The other day we did the bone scan, and (somewhat surprisingly) he had no signs of a bone infection in his body. This is good news, though also doesn't give us any more answers. Last night he had another chest x-ray and had some atelectasis on the right side, so we are trying to get him to lie with that side propped up. This morning he gave us a little scare when he threw up, swallowed it back down, and then de-sated to the mid-80s. We briefly turned his oxygen up and suctioned him, but he returned to his baseline pretty quickly. <br />
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Raul's soluble IL2 came back almost double what it was last week, so we have held his steroid wean. Dr. Tolar came on service today, and in talking to him it sounds like Raul most likely does not fit any one diagnosis exactly. Raul never likes to follow the norms., so I guess this shouldn't be surprising! He just seems to have his own special inflammatory condition. Dr. Tolar actually said that this is good though, as it opens us up to more treatment options than if it were just HLH or just TMA/etc.. They were looking into a few medications today to see if we could get them for Raul. He also agreed that the kidney biopsy was likely not worth it, as the treatment for that condition would likely be steroids, and he is already on steroids. <br />
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Dr. Tolar seemed optimistic that we could get Raul home in an acceptable condition and also that he may perk up a bit more as we continue to wean his sedation. We do not expect that he will be the same as he was before his cardiac arrest, but any improvement would be great! He has already gotten more alert this past week as we have weaned both the Ketamine and Fentanyl a bit. </div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-7037460674177773612016-04-12T18:55:00.004-07:002016-04-12T18:55:57.420-07:00Day +189<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIBzWJvnq56sLr2eG9KU95CodA9aozwWA69ALujAqn3o-DodPARpxwyyBmRm7jaKvTd4K6utYxNhHaldmp6LJeyDu4ZmT_YZLKzTtEadrIIAphVASC_NEapu6T7wKlrMHfj8rnaWlYhO0/s1600/20160411_152501.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> Well my last post was about Raul's improvement in his throat, which has been our best recent news! He is still having some old blood coming out his g-tube, but I think some is from his mouth as he has an area we have seen bleeding at the back of his mouth. We did give a dose of the clotting medication tonight just to be safe with the mouth bleeding, but it is not bleeding heavily. His antibiotic for his throat ulcers finished yesterday as well. <br /><br />Yesterday Raul had a CT scan as he has continued to have fairly constant high fevers. We looked at his sinuses, chest, abdomen, and pelvis. They found what looked to be some pneumonia in his right middle lobe, so we added a course of azithromycin for that. This doesn't explain any long term issues, but may help explain some of his most recent fevers/discomfort. Tomorrow we will be doing a bone scan of his whole body to check for bone infections. A PET scan had been recommended to look for infection throughout the body, but was not a good option for him due to his kidney failure, so we did the CTs and bone scan instead. When you have kidney failure, any test that requires contrast could finish off whatever remaining kidney function you have left, so isn't a good option.<br /><br />We have been switching over many of Raul's IV meds. to J-tube versions, and today were actually able to remove one of his PICC lines! His line from November was no longer central, so they said it would be more risky to leave it in (clots, infection, etc.), than to have to place another line in the future if it were needed. It is so nice to only have him hooked up on one side now! First time in almost two months! Really his only meds. left that could be switched over from IV are his sedative/pain medications. We are also back up to full feeds! He is getting a new renal formula, so his goal amount was lowered and it will be better for his kidneys. <br /><br />Raul had a long bout of agitation Saturday evening, but has not had a really bad night since. He has had discomfort, especially with the high fevers, but not full on freak outs. He is also coughing a lot, so that keeps us up some, but it is good as he has a lot of junk in his lungs and throat! The past several days Raul has seemed pretty out of it during the day, so today we went down on his ketamine dose, and he did stay more awake. We will be working on weaning both the ketamine and fentanyl as he tolerates.<br /><br />On the day of his last respiratory arrest Raul had been given a stroller by a wonderful local family with several children with special needs. He finally got to go in it for the first time three days ago, and loves it! He looks really comfortable in it, and has spent long periods of time sitting in it each afternoon. We are hoping to take it outside soon as the weather is supposed to be warming up. It tilts, which is really nice, and also has tie downs so it can be used in the car. <br /><br />Our most confusing news came last Friday afternoon. We had been asking the team to consult Cincinnati, as they are the top research hospital for HLH. Well that happened Friday, and that team wasn't completely convinced Raul even has HLH! He still may, as he does meet all the criteria, but they wanted some other things looked into as well. They had made suggestions on testing for infections, as that would cause his inflammatory markers to be high like HLH. They also suggested looking into the TMA/TTP/aHUS category of issues again, so we have sent of more blood work. A kidney biopsy was discussed as it can be helpful for some of these diagnoses, but he is too high a bleeding risk for that to be worth it, as we could treat without it. Tomorrow we should get more of his HLH and TMA/TTP/aHUS lab results back. The potential change in diagnosis does not make him any less sick/fragile, but it does mean we could possibly find something more treatable than the HLH. </div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-71970366466662783072016-04-12T18:26:00.000-07:002016-04-12T18:26:01.976-07:00Day +185<div style="text-align: center;">
Sorry, but I have to share this amazing progress despite the slightly
gross photos! Last week Raul's throat was referred to as having
"gruesome" pseudomonas in nickel sized ulcers around the piriform
sinuses as well as a pedunculated mass. We were told it couldn't get
much worse, and likely wouldn't ever heal. Well today ENT went back in
and the ulcers were essentially GONE (he had fully removed the mass
before)! There was nothing there for him to even consider cauterizing! </div>
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We will finish out a course of his tobramycin for the pseudomonas.
These ulcers were likely caused by infection causing the sites to erode
over time, and despite them not being found earlier, amazingly they
still healed. It doesn't mean he is out of the woods for
bleeding/choking, but these were the sites we were most concerned about.</div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-48086327253922208582016-04-07T13:11:00.000-07:002016-04-07T13:11:35.091-07:00Day +184I'm sure this will end up being a long update since I have not updated in a few days! Yesterday was Raul's 6 month post-BMT date, and in the afternoon Raul was moved back up to the BMT floor. We are happy to be back! He did have a long period of agitation in the evening, but calmed down through the night and has been okay so far today. He breathes strangely when very agitated, so they did a chest x-ray and blood gas just to be safe, and both looked good. Today he has napped on and off, but we will try to get him up for a while later with hopes that he will sleep better tonight.<br /><br />Raul went back on continuous dialysis Friday after his ENT scopes, and then the machine clotted again around 9am Sunday. He again lost his blood, but still maintained his hemoglobin pretty well. Even though they had slowed what they were pulling, he ended up below his dry weight and was a bit too dry so had to get two fluid boluses to help. After that we were able to skip regular dialysis Saturday and Sunday, which was nice! Monday they got off all they needed to without problem, and again Wednesday. Both days he was just under his dry weight after dialysis, but the bed scales are hard since they aren't 100% accurate. Today his weight was the same as after dialysis yesterday, and he even peed 34g, which made nephrology very happy! Hopefully tomorrow we will only have to run three hours. We have also been running only a very small amount of formula the past week to help with his fluid status, so we are hoping to be able to go back up now that his weight is more under control. <br /><br />Raul continues to run frequent high fevers. He tends to get more irritable/agitated when he has the fevers. Despite some improved numbers, his HLH is still considered active, so it could be related to that. It may also be related to the pseudomonas that grew both from his ET tube (when it was in) and the ulcers in his throat. We are treating that with an antibiotic it is sensitive too, but it may just take time. Tomorrow ENT will take him back to the OR to scope him again and see if there is any improvement to the ulcers after 1.5 weeks on antibiotics. <br /><br />The pedunculated lesion pathology showed inflammation and bacteria, so it does NOT appear to be malignant. Hopefully this will improve with the antibiotics as well. We got to see photos of this lesion, which were interesting. We have discussed options of cauterizing the ulcers or injecting steroids into the sites to help healing, but of course both options come with risks and are not guaranteed to work. We will just have to see how things look tomorrow to start. They briefly discussed leaving him intubated until ENT looked again, but at the time it was looking like ENT wouldn't have time until next week, and thankfully we all agreed we did not want to leave him intubated that much longer if we didn't have to, so he was extubated on Tuesday! Being intubated would not prevent him from having bleeding issues anyway, though would likely make it easier to manage if there was a problem. <br /><br />When checked last week, Raul's engraftment had dropped more. His CD3 was 89% but CD15 was only 9%. However, with the CD3 still high, the CD15 can still rise. It is also more important to look at the clinical presentation, and clinically Raul's skin has improved! His worst wounds have not changed much, but mild/moderate ones have. And especially new ones! His chest healed from CPR within 10 days! That certainly wouldn't have happened before transplant! We are still waiting on the results of the donor cells in his skin. He also has not had esophogeal strictures since before transplant, and has not had any corneal abrasions in that time either. BMT is not supposed to help the eyes, yet many patients find that it does. <br /><br />Raul's soluble IL2, an HLH marker, has been trending down. However, other things like his ferritin are still increasing (doubled this week). It is a mixed picture, but shows that at least things are staying fairly stable, not rising uncontrollably. We are considering several options to improve his HLH, as he still has active disease. It may not be curable at this point, but at least should be able to be improved.<br /><br /><br />
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-22767014701250785162016-04-01T18:10:00.000-07:002016-04-01T18:10:35.825-07:00Day +178<div style="text-align: center;">
On Wednesday Raul had an echo in the morning, and dialysis in the afternoon. His echo showed a little left ventricle enlargement, but showed the function to be normal. His dialysis run was a bit complicated so the nephrologist stayed in the room for the full three hours with the dialysis nurse. We ended up getting off 900ml, but did have to give him blood pressure medicine to get through it. He also got a large blood transfusion during dialysis as his hemoglobin had dropped very low. <br /><br />Raul has been waking up early every morning (like 4am), and watching movies. He has been very awake and alert overall, but doesn't seem too freaked out by being intubated. Since he seems comfortable, we are not going up on his sedation, though he does get extra doses here and there. Hopefully with less sedation and a better sleep pattern we will not end up with as bad ICU psychosis this time! <br /><br />Yesterday they decided to start continuous dialysis since we had been having so much trouble with regular dialysis lately (no full runs/hadn't gotten him to his dry weight in about 10 days). So we started that in the afternoon, and then had to restart at night because the circuit clotted. Unfortunately, when it clots they can't rinse back his blood that is in the machine, so he lost about 160ml, but amazingly his hemoglobin didn't drop significantly. They had to call back in a dialysis nurse, and the doctor had to stay late. They got him back on around 10pm. <br /><br />He also had a flexible ENT scope done at the bedside yesterday morning. ENT has been a bit resistant to look as they hadn't been sure how they would treat something even if they found it, but the ICU/BMT/Nephrology attendings were all firm in wanting it done! They didn't see anything major, so the last thing I heard yesterday was that they were not going to do anything further. However, around 8am this morning the ENT attending came in and asked if we knew he was going to the OR (neither the nurses or I did). They had gotten a cancellation so the ICU attending had snagged the slot for Raul for a more invasive scope. So we had to take him off continuous dialysis again and get him ready to go. <br /><br />Raul is at a point where he could be extubated, but they had wanted to wait to see what ENT said, and we are now waiting to see if any more intervention will be needed. During today's scope they cauterized two spots in his nose, and packed it, but did not feel those were the sources of the major bleeding we have seen. They also found a decent sized ulcertation on one side and a pedunculated lesion (and ulceration?) on the other side of the <span class="_5yl5"><span>posterior piriform sinuses. They felt that this ulceration could be the source of the bleeding, though it was not actively bleeding today. They do not know what the lesion is so took a sample for pathology. So now we wait to see if anything else will be done, and when we will be able to extubate him. For now we put him back on the continuous dialysis since it is gentler and he is not moving a lot anyway since he is intubated. <br /><br />And lastly, amazingly Raul's soluble IL2 was NOT higher this week than last. However, it is still above normal, as are his other labs, so his HLH would be considered active. The new BMT attending is reading through his history and then either he or Dr. Tolar will reach out to Cincinnati again, as they have the top HLH research center. Dr. Tolar had talked to several HLH doctors when Raul was diagnosed, and at that time they all agreed with the treatment protocol we were doing. Raul's case is very complicated though, and he has not responded to first or second line treatments, so it will be nice to have more eyes on his case and maybe they can tailor a treatment to him. </span></span></div>
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<span class="_5yl5"><span><br /></span></span>Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com1tag:blogger.com,1999:blog-3441789981921558886.post-86017805202278914202016-04-01T12:07:00.001-07:002016-04-01T12:07:35.805-07:00Day +175<div style="text-align: center;">
(written on 3/29)<br />This afternoon Raul was again unable to manage a
nosebleed, and ended up intubated during a code. Thankfully this time no
CPR was necessary, and he actually did start taking breaths on his own
pretty quickly once they started bagging him (before intubation). </div>
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He had a couple small nosebleeds in the past week, and he was actually
still getting a medicine to help his clotting, but this one must have
been worse. It was strange, as no blood came out the front of his nose<span class="text_exposed_show">
even when we sat him up, it all went down the back. We only knew it was
happening as we started to see some blood draining from his g-tube.
Thankfully both his nurse and the hospitalist were in the room with us
at the time the code needed to be called! </span></div>
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We will get his final HLH marker for the week back tomorrow, but at
this point I think everyone would be shocked if it had not gone up. We
did increase his steroid dose today to hopefully help with some of his
symptoms (he has been having fairly constant fevers, and we have been
having trouble with his BP during dialysis). Our goal is to get him
home, as it has always been, so that is the next step!<br />
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-48166873702270257282016-03-26T14:40:00.000-07:002016-03-26T14:40:44.283-07:00Videos<div class="separator" style="clear: both; text-align: center;">
It might be hard to see as the videos don't upload with good quality, but if you look closely you can see Raul smile/smirk occasionally in these two videos from last weekend! <br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwHGeg37vUD7VaD1ytDDuudy7S61lqEBfQC9s7NLdf8QntqOw-FFI888e0Dp5uEC4t5JLaFEpJNPjs9igmTUw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com1tag:blogger.com,1999:blog-3441789981921558886.post-13745577884117171132016-03-25T18:00:00.001-07:002016-03-25T18:00:51.026-07:00Day +171<div class="" data-block="true" data-editor="ainip" data-offset-key="ab7tl-0-0" style="text-align: center;">
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<span data-offset-key="ab7tl-0-0"><span data-text="true">On Wednesday Raul had his GJ tube placed and had his 6 month post-BMT tests. During his blister test, the blister started at 15 seconds, but took over two minutes to completely blister! In the past they have all only taken around 40 seconds, so hopefully this means his skin is getting stronger! It will take a bit longer to hear about the percentage of donor cells in his skin and how much collagen 7 there is. His GJ is working well, and we are slowly increasing his feeds.</span></span></div>
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<span data-offset-key="8ma2k-0-0"><span data-text="true">Unfortunately, the last few days have been rough, and Raul has been pretty unhappy. Along with everything else, we think he is likely just bored and frustrated, so we are trying to think of different things to do. This afternoon we took a short walk, and stood outside for a couple minutes of fresh air. He did seem calmer when we were outside. Hopefully soon we can cut down on the number of IV pumps he has to make it easier to walk around! </span></span></div>
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<span data-offset-key="ahprd-0-0"><span data-text="true">Raul's soluble IL2, an HLH marker, this week was about double what it was last week. It went from the mid 3,000s to low 7,000s. Some fluctuation is normal, but this was quite a bit higher. They will not officially make any conclusions based off this one result, so we will have to see what it is next week before making any big decisions. For now we went back up slightly on his steroid and will keep his CSA dose therapeutic (we were considering weaning it again). He has had a few fevers, but not constant at least! It is possible that some of his fussiness is just feeling overall crummy. </span></span></div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-82262522371202481542016-03-22T18:53:00.002-07:002016-03-22T18:53:33.771-07:00Day +168<div data-contents="true">
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<span data-offset-key="1acup-0-0"><span data-text="true">Raul's video EEG was somewhat abnormal (as they expected), but he did not have any seizures! Neurology seemed more optimistic since his MRI did not show a change in the brain shrinkage. We may potentially do another a few months down the line, but most important will be his clinical symptoms. Right now there is no permanent damage evident from the cardiac arrest on the imaging, but that doesn't mean he won't have any. </span></span></div>
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<span data-offset-key="6fl33-0-0"><span data-text="true">Since Saturday he has been much more alert, and been staying awake all day/sleeping all night. On Saturday he screamed once at bedtime, not at all Sunday, and only once yesterday at bedtime. Today he has been more unhappy, unfortunately, but still alert. This morning his belly was bothering him and he threw up his meds., which upset him. I am looking forward to getting a GJ back so we don't have to keep putting things in his stomach that isn't working properly! </span></span></div>
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<span data-offset-key="eknc9-0-0"><span data-text="true">Yesterday he had a nosebleed, which was very scary after the last one. Unfortunately, along with him being more alert, he was also scared even though we all tried to stay calm. There were a couple times where he started to choke but thankfully was able to recover on his own. We did suction his mouth and caught a couple clots, as well as drained his g-tube. It was actually a pretty short nosebleed, but felt long since we were so worried about him choking! We gave him extra platelets, did two days of Amicar, and used a little oxygen until he calmed back down. He was most mad about the fact that we had to make him sit up until we were sure it had stopped! </span></span></div>
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<span data-offset-key="b7krp-0-0"><span data-text="true">After much discussion, we have decided to put off the PD cath surgery for now. The BMT team has always been somewhat concerned about infection and whether he would even tolerate PD, but those risks seemed doable and worth at least trying it. However, when the surgeon came by last night he was very concerned about the surgery itself and if Raul could tolerate it. He did end up putting Raul on the schedule for tomorrow despite his reservations, but he scared us enough that we decided to wait for now. </span></span></div>
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<span data-offset-key="4uji3-0-0"><span data-text="true">He may be more stable in the future, and we could do the surgery then, otherwise we will do 4ish days of HD a week in Boston when we go home. Hopefully once his CSA is weaned his kidney function will improve a bit and maybe we can go to only 3 days a week of dialysis. We will still be going to the OR tomorrow morning to switch back to his GJ tube and do his 6 month post-BMT biopsies. </span></span></div>
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Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0tag:blogger.com,1999:blog-3441789981921558886.post-3261047087896230182016-03-19T17:53:00.002-07:002016-03-19T17:53:34.207-07:00Day +165Raul's comfort level has gone up and down a bit. He was very comfortable Wednesday night/Thursday, then more uncomfortable again Friday. Today has probably been his best day yet! He only screamed once, and it was when he was going to sleep, which can be a hard transition. The rest of the day he was very alert/awake, and gave us smiles on multiple occasions! He also did really well both sitting in my lab on the chair and sitting/stretching with PT. It was so nice to see him like this! Of course he wouldn't let me get any good pictures or videos of it, but I got a couple photos where you can tell he just had finished smiling. <br /><br />Last night we got a repeat unsedated brain MRI, which was not significantly different than his one from a few weeks ago. This is good news, as we could have seen increased shrinkage at this point from the cardiac arrest. Today we started a 24 hour video EEG to rule out seizures. <br /><br />During dialysis today we lowered his dry weight and pulled more fluid, as they think he could have lost some weight since he has been back on TPN/not getting formula. They are hoping that as he gets less agitated he will not need as many medicines for high BP, as he had come off of them before his cardiac arrest. <br /><br />I also met with surgery this morning about the PD catheter, and I think they were relieved to see how good his skin on his abdomen is. His WBC/ANC dropped the other day, but now they are coming back up, so we are still looking at next week for the surgery. We may combine it with his 6 month post-bmt tests, might have derm. place more epifix on his knee, and will probably switch back to a GJ tube as he is not tolerating anything through his g-tube. We will put in a shorter GJ tube so that it won't irritate the spot that got the GJ intussusception before.<br /><br />
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<br />Carolinehttp://www.blogger.com/profile/11468952595583368747noreply@blogger.com0