Special treat tonight, an update put together by both of us! First Michoel will take a turn, and then Leah will finish up with a short summary.
Observing and taking care of the Yossman is like playing the
stock market. There are so many numbers we are concerned about,
each one is like a stock. We worry about his creatinine, his
b.u.n., his bilirubin, his coagulates, his blood gasses, his
blood pressure, his pulse, his oxygen saturation, etc, etc.
They go up or down and each one is so important. I only wish I
was “Papa” Greenspan and could cause these numbers to do what I
want by just saying the word. Well, in general his numbers are
doing pretty well, they do go up and down and we worry, but they
all seem to be doing pretty well. Oh, and his white count is up
to 1000 today. That is decent and will certainly help fight off
the rest of his infection. His fever has stayed down for
several days, but his skin problems and blisters are still
there.
Today was very special, for the first time in 5 days, Yossi
responded to us. I told him goodbye and he opened his eyes,
looked at me and waved his fingers. He also tried to smile and
he motioned that his throat hurt from the tube. When the nurse
moved his arm he grimaced. I hope this pain is not too serious,
and that he is either just stiff or his skin still hurts. But,
this is so great, to be getting him back. They are slowly
reducing the amount of sedation, in preparation for taking him
totally off of it. I can’t imagine how he will feel once he
wakes up and realizes what happened. I am sure he will be so
disoriented, but we will be there to help him every step of the
way. Hopefully they will remove the tube by the end of the
week. Once they do that, he will no longer be considered in
critical condition, which will be a major step. We had a long
talk with the renal Doctor and he said not to worry about his
kidneys right now. Even if it takes 6 more weeks for them to be 100%, that will be ok. He still feels there is an
excellent chance that they will return to normal and all the
other problems he has, as well as the immuno-suppressant drugs
are causing them to take longer to heal. Still, this illness
is a major setback for Yossi and will extend the time he will
have to stay in the hospital. But, we forge ahead, one day at a
time, because the only thing I will accept is his complete
recovery.
Ok, Yossi, keep up the good work and rest well. We will have a
lot to catch up on when you are awake! Love, Papa
As soon as Yossi was sort of opening his eyes, I was trying to get some sign out of him that everything was alright. I called his name, and Yossi opened his eyes for a moment. I asked him if he was OK, and he shook his head YES. I started crying I was so happy. Later, as Michoel mentioned, he was able to tell the nurse that his throat hurt. Yossi was also curious about the tube and stuff on his face. I saw him trying to bring his hand up to his face, so I told him about the tube and and the stuff to hold that tube in place. I also told him that today was Tuesday, the day he was supposed to put on Tefillin. I saw his eyebrows frown, and he looked like he was upset. I told him to calm down, and that he would put on the tefillin as soon as he was more awake. I put on a tape that Rabbi Bart had made for him. This tape has the chanting that Yossi will need to do as he "sings" the portion of the Torah (our Bible) at his Bar Mitzvah. Yossi got a little smile on his face as he listened to it. I am hoping that as they reduce that amount of versed he will become a lot aware of us!
The kids are doing really well in the school they are attending. Goldie has only girls in her class, and has made friends with them. She wants to have 2 play-dates this week, as well as sleep over a friends house on Shabbos. Shauly is thrilled to be in a class with so many boys. He has no idea how many girls are in his class. Chanie doesn't want to go to school. Her comment to me last night was, "I didn't come here to go to school, I came here to see Yossi." I burst out laughing when she told me that! Chanie has always had problems with separation anxiety. I feel that a lot of this might come from her young age when Yossi was first diagnosed. She got "dumped and abandoned" by me a lot when Yossi was so sick then. (She went to my in-laws so many times that she used to cry when they came over.) But she still is enjoying school, and even showed me the work she did today. And Sruli of course is happy to have all his siblings here. I think he was lost without them. He didn't know what to do with himself. He is still using Toy Story 1 & 2 and Chicken Run (videos) as a security blanket. Sruli watches one of those 3 videos from the time he wakes up until he goes to bed. Tonight I finally hid them from him since I am so sick and tired of seeing the same moveis! They are great movies, but not when you've seen them at least a 1000 times.
My mom left tonight. It was very hard to see her go for a number of reasons. Besides the help she has given, I know how much more she will worry about Yossi. On top of that, she is having surgery on Monday. If you have some time, please say a pray for her, Shaina Tzvia bas Chana Zeesil.
The doctors are all pleased with Yossi's progress. We all need to continue to pray for a rising white count, receding mouth (and throat) sores, and for him to PEE! Pray for Yosef Chaim ben Breindle Leah.
ps--I almost forgot that I had pictures for you! My cyber-friend Dovie helped me to help all you see the pictures better. When you click on the link, it will open in a new screen. This should help since this page wonn't have to reload everytime you hit back. Just close the screen by clicking on the X at the top when you are done. :-)
This is a close up of Yossi tonight. You will notice how nice and clean his mouth is. Also, the stuff you see in his eyes is drops they put in to keep them moist. Since he isn't blinking, his eyes would dry out otherwise. And when Papa got ready to leave, Yossi opened his eyes for a moment, and he "waved" with his fingers.
Yesterday the renal doctor wanted Yossi weighed on a sling scale. It lifted him up off the bed to get a more accurate weight. It took 4 doctors and nurses to get him lifted.
I worked for a very long time to get Yossi's window to look perfect. I copied the logo from his cap he got in honor of the Giants winning the NFC championship. I added Goku from Dragon Ball Z, which I think is Yossi's favorite guy. I also asked everyone to pray and do a good deed for Yossi to help him get better. (By the way, it's just the way the coat is hanging, I am not that fat!!!!!!)
Sruli loves to ride a motorized bike around the floor at the hospital. This is the coolest bike. He drives like a pro!
Chanie got a really cool birthday package from my good friends in NY and CA (Thank you Tziporah, Ora, Chanie, Hinda Leah, Aviva, and Esty.). She got everything she needs to have a party, including a present. Her Hebrew birthday is this weekend, and we will all be together to celebrate it.
Shauly wanted a picture taken with Sruli. You might notice that in the background the TV is on, playing what else???? Toy Story! That's all for today.
I am so sorry that it took me so long to update the site. I just didn't feel like it, but I know how many people rely on us to do it. As I started to read my emails tonight, I realized what I wanted to talk about.
First of all, Yossi's white count is up to 1100. While this isn't spectacular, it's great for him. This is helping his mouth to heal. The ICU doctor was in today, and he said that they are going to try and take the tube out tomorrow. Right now they are lowering his morphine and versed. The night nurse, Julie, said that she doesn't think that they will pull the tube out, because he isn't breathing enough on his own. So, we will see what happens in the morning. He will have to pass certain breathing tests before they remove the tube. So there is a chance that they won't remove it as planned. I will do my best to do a morning update and an evening update tomorrow.
Yossi's kidneys are still not functioning. They did dialysis tonight. His glucose has been high, but our doctor is hesitant to put him on insulin since he is getting so much medicine. Also, insulin is hard to control, so they are just watching his glucose and carefully monitoring him. His bilirubin and creatinin were high today. He also gained some weight. This was all because he didn't get the dialysis yesterday. He will probably be getting dialysis 4-5 times a week. He was also very sleepy today, and barely communicated with us.
As you may also remember, Yossi had a terrible red rash from the top of his head down to his toes. It reminded me of a very bad sunburn. Now his skin is peeling everywhere, and in some places he is getting big blisters. Tonight when the nurse came to help us turn him to clean him, she was shocked by what she saw. She cried out, "Poor baby, oh that must really hurt! I am so sorry!" His skin hurts him all over!
As I was saying at the start of the update, I was reading email and figured out what I wanted to mention. Obviously, all of our family loves Yossi more than words can say. (Don't all parents love their kids that much?) What I am trying to understand is what is it about him that makes all you other people love him so much. He has always been this way, so good, so kind. People have always loved him, and he has always touched many hearts. When Yossi was little, like two or three, we used to go to our synagogue. When we arrived, all the children would come running up to him, calling, "Yossi's here, Yossi's here." Even the older children would be happy to see him. When Yossi got sick, his story touched the hearts of so many people. The email I get from so many of you, people I have never met, who pray and care about him. I really don't know. I guess he just has a very special neshama (soul). He has such a good nature, he loves everyone. I have said this before, but Yossi doesn't complain and say that this whole cancer business isn't fair. He accepts what G-d has given him. He gets down sometimes when certain things happen, but he does't complain about his fate. Even up to last Thursday when he was in such pain, he still wanted to try and do things for himself. He told me that he wasn't going to let cancer get the best of him, and he still wanted to do things for himself. One of my friends Adina told me this past week that his being sedated was a blessing for him. It is giving his body a chance to rest and work on recovery. Adina was so right. As I look over at him, I feel like I am looking at an angel. Right now he looks so peaceful and calm. Even with all the tubes coming out of everywhere.
The other thing I wanted to say to all of you who read this page so faithfully is "THANK YOU". It's not enough. But I am so overwhelmed by the outpouring of help and prayers and cards and gifts and everything. The community here has been wonderful. They bring us food, and help with anything that needs to get done. They pick up the kids each day and bring them to and from school. They make sure our every need is fulfilled. People I have never met call me and ask what they can do to help. I know that there is really no way we could ever really say Thank You, or try to repay anyone back. I have always felt that the way you repay a kindness is with another kindness. But even if I do every good deed I could think of from today until forever, I don't think I could even come close. One thing that I hope to accomplish with the page is to give anyone who has to face this beast the courage that Yossi has used to face it. He has looked the beast in the eyes, and laughed (figuratively speaking, of course). The letters are the most touching. There are people who think of him as soon as they wake up. People who check the site a couple of times each day to see what is doing with him. People who don't know us personally who have become part of our family. Some of you say that you feel like you know us, and I too feel so connected to you. All the prayers that have been offered for this child! It is like we have joined together in one humungous family. I truly feel that we have people from every faith and every part of the world praying for him. The unity has reached out to beyond our religion and united us all in one goal, to help one little boy to overcome this horrible disease. I don't see how G-d can't help but hear our plea! Who knows, maybe Yossi was put here just for this purpose, to unite us all together!?! It is an awesome thought. It is the prayers of each and every one of you who have helped him this far. My love and thanks go out to each and every person who has become connected with us and our plight.
So once again I end the update with my same plea. Send us your good thoughts. Do a kind deed everyday in his merit. And please keep praying for Yosef Chaim ben Breindle Leah.
Last night, right after I finished the update, I found out Yossi's white count was up to 1.6 (1600). This morning when I woke up, it was back to 1.1 (1100). Oh well. I hope that the missing white cells are in his mouth helping it to heal.
All of Yossi's numbers are up, creatinine, BUN, bilirubin... So dialysis is on the plan for today. He will probably not get it tomorrow, but will on Saturday. And as for the tube, well, that is still in. He is just not breathing enough on his own. The "Little doctor" as I call this super nice ICU doctor (who for the life of me I just can't remember his name, although I have asked him so many times I am embarrassed to ask him anymore) lowered his breathing machine. This will hopefully cause Yossi to have to breathe more on his own. As I type, Debb (Yossi's nurse) is preparing the blood she just drew to check his blood gasses to see if he is getting enough oxygen and giving out enough carbon dioxide. The Little Doctor told me that he gives it a less than 50% chance that the tube will come out today. Everyone would rather it come out when he is able to breathe and cough on his own so that they wouldn't need to put it back in. So for now, nothing is new.
In resonse to yesterday's update, I got two beautiful letters. I would like to share them with you, as they give some insight into Yossi's personality. The first one is from Dabney Lewis. Dabney teaches at our school, and has been one of Yossi's teachers since Yossi was in 3rd grade. Dabney is a very talented teacher who inspires the kids to do their very best. Dabney doesn't know this, but when Yossi was talking to someone about him recently, Yossi was saying how in 3rd grade he really didn't put a lot of effort into his work. But as the years have gone by, he tries to do his best to give in good work. I know how much respect and admiration Yossi has for Dabney. The second letter is from Patsy Saunders. Patsy works with my husband. Patsy has done a lot for us, and I know that she has been a friend to my husband when he really needed one. And here are their two letters. I didn't ask permission first as I wanted to get the letters up. :-)
Subject: What it is about the Yossman
Your update asks an interesting question. People who know Yossi
respond to his SMILE as soon as they see him. It radiates warmth, happiness and friendship. I have never heard Yossi say anything unkind about another person, and for these reasons, people want to be his friend. As far as the interest of strangers in him, they can see that angelic face on the website, and even the name Yoss is similar to the word "yes." His name gives people a
positive feeling. I'm glad that Yossi's white count is higher, and I'm sure the doctors and nurses are monitoring his numbers and condition with great care and skill. Caroline is sick at home, and when she saw me praying for Yossi, she did, too. We miss our friends the Paleys, and especially the Yossman. As
usual, you're in our hearts and prayers. Thank G-d that there is
such a thing as dialysis to help Yossi's kidneys get to the point that they can work for him. The same is true of all the tubes. Yossi has perseverence! .......Obviously, the work that you ALL are doing out there is crucial, and we're behind you every step of the way.Best wishes, Dabney
Leah, I just read your update from last night. I can't tell you how much your words and your dedication to sharing Yossi's story, have touched my heart. I'm sure I don't have to tell you, how blessed you are to be Yossi's mother. Anyone that has ever come in contact with him, realizes he is a special child. The many stories that Michael has shared with me over the last few years, make me aware that Yossi is not a typical little boy...that God truly has a special plan for him. I think back to when he had survived the first transplant, and instead of
reverting back to a life that would be typical of most children
of his age, he shared his story and became a voice for this
disease. How extraordinary!
My prayers for Yossi and your family continue......
Patsy Saunders
In yesterday's update, I thanked so many people, but I forgot one very important group of people. There are so many people who for what ever reason walk into a blood bank, roll up their sleeve, and donate blood, platelets, and plasma. Yossi's life is indebted to the names 43 people to count who have given Yossi this gift of their life. (That's not including the marrow Grandpa gave to the YossMan.) Thank you to all the people world wide who care! G-d bless each and everyone of you!
Keep praying for Yosef Chaim ben Breindle Leah.
Ok, Papa is back...I am always so worried and scared for Yossi, but sometimes those feelings are really strong. Tonight was one of those times. He seemed to be having a good day, although he was even sleepier than yesterday. That was odd, since they have been weaning him from his sedation. Yesterday he would open his eyes if you called his name. Today that wasn't the case and that was one of the reasons that they didn't extubate him this morning as planned. He had dialysis and about 3/4 of the way through his blood pressure started going up too much. This was odd since it usually goes down during dialysis. Right after that, he started moving around a lot and showing signs of being in great pain. Every 20 seconds or so he would grimace and move his arm. I tried over and over to find out from him exactly what was hurting him, but he really wasn't able to communicate this to me. Eventually it appeared that it was mostly his throat, but we are still not 100% sure. I felt so bad for him, he was obviously in great dicomfort and I couldn't find out what it was and I couldn't help him. They gave him meds to reduce his blood pressure. This is given under the tongue and supposedly tastes very bad. He got it twice and really didn't like it. He was laying there so helpless and vulnerable. Even though the doctors and nurses are very nice and caring, it is still a very pitiful situation. If he could have at least told us what was wrong, we could have tried to soothe him. Then they had to basically totally uncover him to weigh him again, and even through his haze and pain, he tried valliantly to cover himself up, out of modesty. What a great kid he is. This whole time of his illnesses, we, his parents, are so helpless. I mean, we try our best to get him the best care and to stay informed and on top of everything, but that is really all we can do. Even though the doctors are great, no one cares about him and wants to help him as much as we do, and we CAN'T. How much does he have to suffer??? As he wakes up more and the tube finally comes out, he is going to be in a lot more pain. And, his skin is still bad, he has terrible blisters, great areas of peeling skin, thick leathery hands, and where he isn't red, he is very yellow, due to his high bilirubin. It is just such a terrible situation for him. It must be very scary also, to start waking up after a week asleep, to hear all these loud voices, to have your eyes be too sensitive to the bright lights, to have all these machines and tubes connected to you and coming out of you! I will never understand why this has to happen to him, and even all the good that has come out of this so far, and hopefully all the good that will continue to come out of this in the future, will NEVER make up for all of his suffering since 1997.
Last night was a bad night for Yoss. He has a low grade fever, and his blood pressure has been way off. (Top number was fine, bottom number way too low ie--110/39) He has a lot of rusty/greenish colored secretions. They just took a chest x-ray and sent the secretions off to be cultured. He was in terrible pain all morning.... eyes opened, every time he coughed his whole body would contort in pain. One time I asked him if his whole skin hurt, and he shook his head yes. They are probably not going to take him off the vent, but I should know more soon. The ICU doc is thinking that there is some kind of infection going on. He said that is what happens when the two numbers are so far apart. He might have pnemonia; the chest x-ray will confrim or deny this. His white count is up to 1400 (1.4), but his hemoglobin is down (10.5) and his platelets are down (64K). He is in a lot of pain even with all the morphine and ativan and propofol they are giving him. It is a delicate dance they are doing, trying to keep him comfortable, but not too sedated.
More than anything in the world I want to pick him up in my arms and rock him and soothe him. Or climb into bed and cuddle with him as he so loves. But there is no way I could do either without causing him tremedous pain. It is tearing at my heart to see him hurting and to watch helplessly. Mommy's are supposed to kiss the booboo and make it better, and all the kissing in the world isn't going to help him.
Now is a time to break out big guns and pray as hard as we can. Please give charity in the name of Yosef Chaim ben Breindle Leah, as well as continiue to pray for him. (The act of giving charity helps to protect one from death. Not that I feel he is going to die, but it's not going to hurt him, and it can only help.)
Your prayers have all helped. His lungs are excellent. The problem that he was having this morning is that the tube was too far down. That is what might have been causing him great pain. Dr. Cornfield was ready to take the tube out this afternoon, but when he saw the blood around his mouth, he decided to hold off. It appears that the mouth sores are NOT totally healed yet. So actually, everything that happened was truly all for the good. If Yossi hadn't been so uncomfortable, then they wouldn't have moved the tube. And if the doctor hadn't seen how bad the mouth was, he would have removed the tube. The problem with taking out the tube right now is that his mouth might bleed, and he won't be awake enough to help cough and get rid of the secretions. So for now the tube will remain in place until at least Monday.
The little doctor (Mayank) was in this morning to speak to me about Yossi's sedation and pain control. He was very nice, and told me that if I am ever unhappy with how things are going, I am to page him. Even if he is not on call, he will still take my page. He was very kind, and really put my mind at ease.
As usual, there will be no updates until tomorrow night in honor of our Sabbath. I continue to be amazed at the support we get from all of you. Thank you again for your concern and prayers. Please pray for Yosef Chaim ben Breindle Leah.
First a little good news, Yossi's white count is up to 2200, which puts his ANC at 1800! This all means that if he weren't hooked up to a vent, and this would stay the same for 3 days, Yossi would be walking the halls and getting ready to leave the hospital. Obviously, that isn't possible right now. But it is still very encouraging, as it means that the marrow is engrafting, and the white cells will help his mouth to heal. Even hooked up to all this stuff, he still looks like an angel to me. They also got 175 CCs of urine out. But the kidneys themselves are still not working. He is getting dialysis every other day now. Two night ago they had the ultrasound done at the same time Yossi was getting dialysis. The nurse from respiratory was in the room as well. The ultrasound tech commented on how we could have never fit everyone and everything into our old room. Here's why! The first machine is the ultrasound. The second one is the dialysis. The woman in the background is from respiratory. That's Yossi way in the middle of everything.
Tonight Yossi got another low grade fever. He also had a lot of "green stuff" coming out of his nose, which the resident thinks is bile. I asked her about giving him something to help him go to the bathroom, and get the bile out of his system, and she is going to bring it up with the doctors tomorrow.
Yossi's rash is slowly improving. It's like his body was covered with a bad sun burn. We think his skin is very sensitive. Every time the nurses have to move an arm or leg, his face contorts with pain. We are not sure if it's his skin or that his muscles are sore. He started PT (physical therapy) last week, and will continue. All over his skin is peeling. And where it used to be flaming red, it's now got patches of yellow showing through. (Don't forget that his bilirubin is high.) He still has a tremedous blister on his heal that just won't pop. It's full of blood and serum, as they keep telling us. Fair warning, it's gross. See if you can stomach it. I don't think I am going to put anymore pictures like this on, becuase Michael said that Yossi would get mad at me. I am not sure, but I will wait and ask his permission first.
Today was Chanie's Hebrew birthday. We ordered her a cake from the local bakery. When we opened the box, Chanie said that it didn't look like mine! What an understatement! The picture is nice, but it was supposed to be a Barbie. I guess that I have high standards, and this is just a bakery cake. My kids are very spoiled, what can I tell you?
This past Shabbos, I tried to spend a lot of "quality time" with the other kids. (I truly hate that word, but there is no other way to discribe it.) I think that the other kids might be jealous that I am spending so much time with Yossi, and he can't even talk to me. That doesn't mean that I don't get mad, or punish them when they misbehave. But it was sort of a normal time for us.
Tonight I did a load of laundry. I accidently shrunk my favorite sweater. Now in the whole scheme of things, this is totally dumb and meaningless, but it made me feel so down. (I didn't realize that this sweater was 100% rayon, dry clean only-- and they meant it!) Goldie will now have a new sweater to wear which should make her totally happy. What I am trying to tell you all, is enjoy your life. Don't sweat the little stuff, it really doesn't matter. What matters the most in life is your family and your friends. Live life to the fullest, hug your kids and tell them how much you love them. You truly don't know what tomorrow is going to bring. Also, there is so much good in the world. Look for the good in everything, because it's there.
This Friday is the new Jewish month of Adar. Adar is a month of happiness. It was in the month that the Jews were able to overcome an enemy that set out to annihilate them. I feel that as we approach this happy month, Yossi will be able to fight his enemy. And truly the month will be one of celebrating and rejoicing for us!
Upcoming plans--Monday the tube should come out after dialysis. Tuesday is the big day, day +21 where they will do a bone marrow aspirate and biopsy to see how the marrow is engrafting, and what is really going on in there. It's a day for extra prayers.
Keep on praying for Yosef Chaim ben Breindle Leah. It's working, slowly and steadly the YossMan is regaining his strength. Please G-d, when this is all over, we will make a gigantic seudas ha'daah (a meal of thanksgiving).
Today is starting off to be a very good day, it is 3 degrees and snowing lightly.(can you guess who is writing this update by that last sentence?) Best of all, The Yossman's white blood count is all the way up to 3900! That is excellent and should really help him get stronger and better quickly. His bilirubin and bun are somewhat better and his latest fever seems to have broken already. Hopefully they will remove the breathing tube tomorrow! Stay tuned for more news later and do remember that unfortunately things can change pretty quickly, but hope for the best!
Even though I haven't gone to sleep yet, it is really the 19th, so I have to put the correct date. I won't tell you what time it is!
Yossi has had a really peaceful day. Grandma and Grandpa stayed with him all day. He had a few visitors, but he didn't know it! :-) The plan remains the same-- dialysis in the morning and then the tube will come out! Hopefully the YossMan will be able to cough and breathe on his own, and not have to get the tube put back down. (This is in no way like what we see on ER. This child will have to be totally awake, and it won't be a little cough to pull it out. I will give a detailed description after the event.)
We had really wanted to do something special with the other kids today. We took them to one of the major landmarks here, Mall Of America. This is the largest mall in the country. There are four levels in it. Basically, it has every store in your town all in one mall, plus a bunch you probably don't have. Chanie really wanted to ride on the rides. We also were planning on getting Sruli a Buzz Lightyear Action Figure doll (not the little one, the big one). We looked for the doll in a bunch of toy stores, but we didn't have any luck. I took Shauly, Chanie, and Sruli and headed off to Camp Snoopy (an indoor amusement park). We went on several rides. Chanie was very disappointed as the one ride she really wanted to go on, she was a little too short, and they wouldn't let her on. Then we went on the merri-go-round, and she really wanted to ride on the blue dragon (the one Yossi rode on). She didn't get on that one either. She cried during the whole ride! Then we went on this little roller-coaster (which was a lot better than this crazy one we've been on with cancer!). She loved it. She said it was the best ride. I was so glad, as we were out of tickets. Then Michael and I took the kids to the kosher pizza shop. The kids enjoyed pizza, fries, and soda. They LOVED the ice cream for dessert. Since we keep Cholov Yisroel, which is an extra stringency with our milk products, we never get ice cream in at home. This was such a novelty for them.
I have been here with Yossi, and he seems to be very comfortable. I have been searching the internet trying to find the baby this Buzz Lightyear Action Figure. Every time we take the baby to the bathroom here, he passes it in the hall. He gets real excited, and often he shows his "little Buzzy" to the "Big Buzzy". I think that it would make him very happy.
I doubt that I will be able to update the site before noon tomorrow. Dialysis runs for 4 hours, and they won't take the tube out until after that. I will post an update as soon as I am able to.
One more favor ... In the early afternoon on Monday, my mom is having surgery. I would really appreciate prayers for her. We see how much the prayers are helping Yossi. This is a serious surgery, and I would really like an extra boost of help here. Her name is Shaina Tzvia bas Chana Zeesil. Don't forget to pray for the YossMan, aka Yosef Chaim ben Breindle Leah.
Well, there is nothing really to report, as nothing much has changed. Yossi still has the tube down his throat, and it might not be for a few more days before they think about trying to extubate him again. The ICU doctor turned off the vent for a couple of seconds, and Yossi just layed there and didn't breathe. The simplest thing in the world, and he didn't do it. It made me a little sad. (I stood there going "Breathe Yossi, breathe".) It really makes me appreciate the bracha (blessing) we say after going to the bathroom. It really is a gift from G-d that all of our bodily functions work they way they do. We are still trying to do the "pee-pee dance" to get Yoss to pee on his own.
Yossi's hands have gotten worse. They look like they still have cheap imitation leather gloves on them. His fingers are puffy and his hands themselves are swollen. The doctors think it might be GvHD, along with his arms and legs. His white count this morning was EXCELLENT - - 6.6 which is 6,600! It's almost enough to stop the GCSF.
I can't imagine how painful Yossi's body must be for him. It's still covered in a rash from head to toe. His foot has that big blister and his hands are swollen. That tube must hurt too! I am not so upset anymore that they aren't taking the tube out. Every day that he is sedated is a day he isn't in pain. When they take the tube out, they will have to have him totally awake with no pain med. That will be hard.
I got a very funny email about my typos. Someone noticed that I consistently type "ever" instead of "every" and "think" instead of "thing". My dad gave a cute reply -- Don't worry, "everthink" will be OK! Yes Daddy, you are right. I truly feel that it will eventually work itself out. Once again, I type in HTML, not in WORD and I don't proofread my work. I know you all know what I mean. It cuts down on my time spent on the computer.
I have no news yet on my mom. Continue to pray for the YossMan, Yosef Chaim ben Breindle Leah and for my mom, Shaina Tzivia bas Chana Zeesil.