July - September 2003 Updates... September 17,2003 Today is Wednesday...One day seperates Othello, myself and home. As of right now, Othello is in the PTSU about to get infusion of Cytogam and a scope of his intestines. Once that is complete, we will return to our room at the Transplant house until the morning. BIG news...A&E (that is a cable channel) is doing a 10 part series on Organ Transplant and Donation. They are following the Transplant team around and learning more about transplant life. Othello got a minor role!! heheh...He loves the camera! They asked us a few questions and filmed the lil guy..they are enjoying the company of the transplanted kiddos!! Othello seems crabby right now. He is wanting to nap, but everytime he tries...he is awaken by nurses, techs or doctors. He is not a happy camper!! When we go backl to our room at transplant house, I will let him get a much needed and well deserved undisturbed nap! We should be returning home tomorrow!! YIPPIE!!!!! We can hardly contain our excitement!! __ September 16....2003... Othello had his labs and clinic appointments today!! All went well. The donor cell count is 0.24 That means for the 100 cells per/ml Othello has 0.24 donor cells. This is great. His bone marrow was not affected by the campath either. This all means, that Othello is a-okay for now. They are going to monitor his blood work and determine if he needs more Campath in about 2 months. If all goesd saplanned, Othello will not have another bout og GVHD (graft vs. Host Disease) AND not need more Campath!! Tomorrow Othello will get his Cytogam infusion and scope w/ biopsy of his intestine. As lng as everything is still looking good...Othello and Mommy will return home Thursday!!! September 15, 2003 P.M. Othello was Cranky with a capital "C"today. He fussed and fussed when Mommy was not in site. When mommy was back in view, he showed her how much he protested by fussing even more!! YEAAAAAAAAAAH!! ADVIL!!?!?!?!? Tomorrow we have Labs at 7:30 a.m. and Clinic at 10:00. At 1:30 we will go to group (Just to have something to do) Othello will look so handsome in his mommy modified designer face mask!! WooHoo! As long as things go as planned, we can come home this week!! YIPPIES!!! Well, I will update as soon as I can after everything tomorrow. Take care and talk to you all soon... Monday...Monday!!! Ahh, another day in the peace and quiet of the Transplant House....Let me tell you all a story about something that happened this weekend.... I woke to use the restroom about 1 am Sunday morning. There was a Gekko in the potty (toilet for all of you non-children having people) It looked at me with its beady eyes!! I said, hmm I dont really have to go. I went back to sleep. At around 9 a.m. I returned, he was still there... Looking at me, daring me to sit down. I got a glove, picked him up. It squealed!! I jumped and then took him to throw him outside. His tale broke off and he ran.... Sigh... But, I did get to use the potty...YEAHHHHH!!! Othello is oding great. The lil spoiled guy LOVES all the attention. HE eats it up. If I am not giving him 100attention, he is screaming. (How sweeeet) I cannot even make his food without him freaking out. This week will be busy. Tuesday clinic and labs. Wednesday infusion and scope. Hopefully Othello can use his charm and convince the dr. that he can go home! September 13, 2003 Saturday.... Othello and I went to the park. We swung and slid. Then we went to the beach and built sandcastles and found sharks teeth. He was so cute in the swimmer diaper. He splashed in the clear ocean and watched the women in bikinis on South Beach!! (Okay okay, so it was just a day dream) We actually are sitting in the transplant house. Othello plays with toys and I wanted to doodle. Now that I have run out of doodle paper, I cannot doodle anymore. No more PAPER! Othello is doing well after his bout of Graft Vs. Host disease. No more organs rejecting Othello!! The campath has worked (so far). Hopefully he will continue on this path. Othello is happy and feeling well. Tuesday and Wednesday we venture over to the clinics and labs. Hopefully Othello will be given the all-clear to return home from the transplant center. Sebastian is going to cousing Joshua's birthday party Sunday! HAPPPPPPYYYY BIRTHDAY JOSHULA (as Sebastian calls him). _____________________ September 12, 2003 Yesterday Othello and I did a whole bunch of nothing. We were back to our routine, without nurses!!! Which is a great relief. I do not have to worry about the issues surrounding the nursing care. Othello seems to be doing very well. He has no fevers, no rash, no vomiting...nothing. (knock on wood) He sat himself up yesterday. He sits fine when you put him in the position, but until yesterday we always had to put him there. He also tried to "Scoot". Othello is on his way to crawling. As I mentioned in the last update..Tuesday is our next clinic appointment and lab visit. Wednesday should be scope and cytogam infusion day. Then, if all looks well, I will request to take the lil guy home. Well, I must go back to the room and do a whole bunch of not a lot!! YEAAAAHH!! Kisses and Hugs from Othello in Miami.... September 11, 2003 Othello and Mommy are at Transplant house. We had a great first night. BORING! Just how we like it. Very uneventful. We did learn that Transplant House is part of an evacuation facility for hurricane time. Lucky us!! We may get smashed by a BIG BAD ISOBEL! Than again, maybe not. Tuesday of next week Othello has Labs and Clinic. Wednesday should be scope and Cytogam infusion. If all looks well, I am going to request that Othello be discharged home. He seems like he is doing great. The Drs here and at home know that we will let them know if anything is amiss. So, I am sure we should be allowed to escape. I will try to let you all know how things are going. It is harder though. There are no internet connections in the individual rooms. I must use the community PC for the conenction out in the living room. (This means Othello is napping) Things are a-okay right now! Pray that this continues! September 10, 2003.... Does anyone relalize it has been 5 months and a day since Othello received his second chance? I am so greatful that he has had all this extra time with us. He is such a joy. His donor is in my thoughts today, as he/she is every day. I sometimes wonder things, like were they a boy or a girl? What did she/he like to eat? I wonder if they liked cheeseburgers. (I always joke with Daddy and say Othello's new guts are saying "I wanna CHEESEBURGER!!!") I wonder how the family is doing? Are they okay? Do they think about the anonymous recipient? ______ Today, Othello and Mommy will be released from the hospital. (Well, Othello will, mommy just happens to be with him 24-7) They will be staying at the Transplant House in Miami for a week or so. The plan for the day: Othello will get his cytogam infusion. Mommy will pack everything into a lil red wagon and move it to the Transplant House. The peripheral IV and the needle in the port-a-cath will be removed. A couple of papers will be signed. Then Othello and Mommy will then go to their new prision (errr I mean home away from home). Daddy is going to come visit Othello and Mommy this weekend. He is going to be here for a couple of days...Mommy may just get some sleep (but, probably not really) Othello looks great. His skin is nice, smooth and not aggrivated. His scope yesterday looked marvelous! No rejction! If the GVHD comes back, or the Dr.feels that his lymphocyte levels are coming up before they want them to, Othello and Mommy will have to return to Miami and be readmitted. Then they will give Othello another dose of Campath. But, I am sure things will go well, and we will be home in a week or two. Once Othello and Mommy get home, they want to see Sebastian and Daddy. Mommy wants to sleep in a real bed and eat some good food. Othello, of course, wants to babble and play in his swing!! ___________ September 9, 2003 The new plan of action: We can go to the transplant house as soon as Othello's supplies get here from Fletcher's, Hollywood Med, SkyMed and Gramma Helen. (she has the plug for his feeding pump) Scope is today. Labs were drawn. And some more pictures will be today too. Othello is doing so well. I am not sure how often i will be able to update you all. I will try once a day. When Othello is sleeping, I will go down the hall to the living room and update the site. We should be home in a week or so. Thank you all again!! From Miami: Jennifer and Othello _________________________ September 8, 2003 A.M. This is the a.m. update about this past weekend. I will be giving the Monday after Dr.s round update around noon. So check back later too!! This weekend gramma Helen, gramma Teri, Granpa Charlie and GreatGramma Darlin' all came to visit. They dropped off Othello's stroller and port-a-crib for the week or two outpatient stay he will have here in Miami with mommy. Othello is looking great! His color has returned to normal and he is very energetic and fun to be around. Othello has been playing his baby piano with stars on it, cuddlign his Teddy bear and gnawing his binky!! On the agenda for this week: • Othello's Port-a-cath is to be removed. It has been difficult from the word go! This line was suppose to make life easier for lil guy. But, it never gave blood for labs and the nurses seem to have a hard time accessing it. The dr. anticipates that no line at all will be required. • Othello will get a scope and biopsy of his small transplanted intestine. To make sure everything is still on the up n up! • Labs ..DAILY! • Go outpatient!!! Buh-Bye hospital room! I hope you all had as great of a weekend as Othello and I did. We hope to be home within a week or two's time. Until then, keep checkin back with us periodically. Noon O'Clock Update: I am beginning to think Othello is not my son. He must have been given to me by aliens or something!! Reason being: HE HATES THE TASTE OF CHOCOLATE!! Now, anyone who knows me, knows that I can eat a pound of chocolate in a sitting and still want more. (esp. pumpkin spice truffles) I gave Othello a taste of chocolate from my lunch dessert. He puckered his lips as if I had just put a lemon in his mouth! Dr. S says we should be discharged on Wednesday. That means Wedensday I will move Othello and myself to the Transplant House. While we are staying in Miami (outpatient), we will have a couple of trips for lab work and clinic visits. Other than those outings, I will keep "Osmellio" under lock and key in our room. I do not want to risk any type of cootie infection. I must call the medical supply company that we use, and have them send his monthly shipment to us here. As well as his medication and feeding supplies. Daddy will be mailing us the feeding tube supplies and special formula. Hope all is well on the outside! Othello is on the verge of napping..so I must get working on all the arrangements. ___________ September 7, 2003 Othello is playing his baby piano today. The Grandparents are still here and Othello is having a lot of fun. There is not much to report. Everything is on the up and up! Still in the hospital, we hope to get out early this week!!! _________ September 6, 2003 Othello has some visitors today. Gramma Teri, Gramma Helen, Great Gramma Darlin and Granpa Charlie!! Yeaaaah! Spoiling day! He is sooo rotten. He giggled and laughed and played with the grands. Gave them shifty eyes, and smirks too. His looks good. He seems to be happy and ready to go!!! Othello gave in and didnt fight the spoon that was feeding him......He ate peaches today. With less mess! I am so proud. Granpa Charlie got to watch too!! Yeaaah.. Well more tomorrow. ______________________________ September 5, 2003 Not much to report. But, I know you loyal Othello followers want to hear what is going on.... Othello H-A-T-E-S getting labs drawn! They wake him at 6 a.m. pin his little baby arm down and shove a sharp needle in the bend of his arm! He cries. Little baby tears well in his eyes. It makes me want to just pick him up, smack the lab person and cuddle him back to sleep! He looks great! Back to normal baby color (as daddy would say). His skin is nice and smooth, as if he got an exfoliating scrub at a spa! (We all know it was not THAT relaxxing though) It looks nice and healthy. Othello has a very low lymphocyte count (under 100). The Dr. may decide to give him one more "blast" of it before he leaves; to get him to ZERO. When any nurse or tech comes in the room they have to wear gloves, masks, and gowns. This helps keep the munchkin safe from any cooties they other kids might have. Hopefully in a week or two Othello can come home! But, we have to make sure he is well on the road to recovery and not relapse!!! Can you believe...in 5 days...Othello will have been transplanted 5 months ago!! We should let him eat CAKE! __________________ September 4, 2003 Today has been uneventful. We like days like this! The doctors rounded and they said Othello is looking good. he is progressing well! His skin is no longer red; the peeling has almost stopped too. We are not sure how long Othello will be in here. But, the doctors need to keep a close eye on the lil bugger! Since he has close to no immune system, he could catch ANYTHING and get really ill. So far, he looks good, and he is happy!! He seems to feel well too. I will update mor elater on today!! HAve a good one! September 3,2003 The day was largely uneventful. We woke up, Othello saw the doctors. They said he is looking good. Dermatology thinks he had a medication reaction on top of the GVHD. This may have caused the rash to get worse as fast as it did. Hmmm. Labs and medications. that is all for today. the little guy napped and played. He also babbled a whole lot. I talked to the Dr. about Hep locking Othello's portacath. He agreed that it is suppose to be done after every infusion (when in use) or once a month (when not in use). Hopefully the nurses (not all of them just a few who dont seem to know proper protocol) will learn something from this! Even after the dr gave the orse, the nurse still did not understand fully. It had to be explained AGAIN!! I hope things get better with the nursing staff, I have gone up the chain of command! It should hav ealready been fixed, but I expected a whole lot of no progress! Talk to you all later! Remember, those of you who have kids in the hospital a lot: YOU ARE YOUR CHILDS VOICE! YOU ARE THEIR ADVOCATE! FIGHT FOR THEM, FIGHT FOR PROPER CARE! ____________________ Septemner 2, 2003 Sorry the website was not able to be logged into most of the day. The servers were being temperamental. Othello is well. Perky and Babylike!! He had a really good day. (Except the tech who yelled at him cause he was crying when she took his bloodpressure...i was less than hapy with her and let her know) He had a busy day...Scope, Labs X2, and an Echo. The scope was to rule out rejection of the organs. Which it did. The nice pink intestine is such a nice thing to see. The labs were to check T-cell counts, Liver function and otherthings. The Echo is something they use to make sure the heart walls are not thickening. this can happen with Prograf (the immunosuppression drug) A week or two and we should be heading back to Jax. That will be nice to be back home. Othello needs to be in a place where i can take a shower w/out worrying about his well being.Plus we will get to see DADDY and SEBASTIAN!! We miss them a WHOLE BUNCHES!!! Be sure to check out the New Pictures page. There will be some more updated on Othello's progress tomorrow!!! ____ September 1, 2003 HAPPY LABOR DAY!! Othello is progressing well. His skin is more flesh toned and less red, with every passing day. He is back to his normal happy self. Othello continues to babble and play. He appears to be happy, even though he is stuck in one small room 24-7. (So is mommy) It does drive us bonkers being in here..But, Othello is getting better. Tha campath was given twice. Now Othello's lymphocytes are around 100. This is exactly what his body was suppose to do. He will be monitored in the hospital for a while longer. They have to make sure to reach a happy medium, a nice balance of medication so that Othello does not go into rejection, get really sick or something unknown. Thank you all again for your support!!! All the wonderful emails have helped to keep me going down here. Hospital life is stressful, for many reasons. It is hard to watch Othello going through these things. It makes it even more difficult when you have some support staff that are not quite up to par. But, hopefully, with communication and help of those in charge, everything will be repaired. I will give more update later on... Until then..BYE BYE from Miami August 31, 2003 Othello looks even better today. The redness is nearly gone! He is peeling and itchy still. The Dr. said his lymphocyte count is around 100; they wanted it below 200. So, he is doing what the Dr. wanted!! He is so good. Othello has been sleeping a lot. I would too if I went through everything he has been through.But, when he is awake he is cooing and babbling again! We hope to be discharged w/in a week or so. but, it all depends on how Othello handles this treatment. So far, so good! Please continue to pray for Othello... I will update more later.... _____________ August 30 Othello is doing a little better each day. His is a bit itchy frm all the dead skin falling off though. Because of the campath, his blood pressure is pretty high. This was expected. Othello has been getting nifedipine to bring it back down to normal. Overall, he is doing a lot better..... ______________________ August 29, 2003 I hate being the bearer of bad news. It is so hard living this transplant life, where you come to love and care for the people that you meet. Stormy passed away today. She recieved her multi-visceral transplant one week ago in Indiana @ Riley. Please keep Stormy and her parents Tavi and Joseph in your thoughts and prayers. Tavi and Joseph..We are all here for you! You are in our thoughts and prayers. Your beautiful Stormy is with Caleb and the other little angels now, watching over us all! ____ Othello is already OUT of the ICU!!! Last night, Othello was given Campath. The plan is to totally eliminate what little immune system he has, as well as the donor cells. This should cause the GVHD to stop! For more information on Campath and what it does, click here. The Dr. will be monitoring his close and they will also determine if he needs to have another dose. Othello will probably be having his spleen irradiated in a few days, but that is still up in the air. This means, they will give a small dose of radiation to the spleen tp make sure all of the cells that are helping attack Othello, are gone! When he woke this a.m. he looked so much better! The rash was 1/2 way gone. His swelling has pretty much dissappeared. Othello is still itchy and peeling, but that will go away soon. With this treatment, Othello will be suceptable to any and every bug, infection, cootie....So, we have to keep him even more guarded. Right now, we are asking for no visitors. For the next month or so we will have him on lock down. (pretty much as we already have) I am not sure yet if we will remain in Miami the whole time. I will update more later on.. ______________________________________________ August 28, 2003 2:50 p.m. Othello is being moved to the picu. They will begin treatment tonight for the GVHD. Right now, I cannot release all of the details. But, please be patient and pray for Othello. I will not be online very often, but will try to update you all daily, even if it is just a line or two. This is going to be tough! Get ready for another loop in the rollercoaster! Keep in mind, we trust the Doctors here and please do the same. Tonight at 5:30 Channel 10 in Miami is running a story from Othello's hospital room. I believe channel 4 in Jax wil be airing that update!! Please keep Sebastian in mind too!! he is far away from his brother and needs love and support too!!!! -Othello's Family 12:15 p.m. Okay..Bare with me: Othello looks worse. They did the biopsies of his rectum and small bowel. His "new guts" look great. His skin looks horrible, his rectum is a bit inflamed. They are 90sure it is GVHD (See questions page). It could also be EBV.EBV (Epstein Barr Virus normaly causes mono in healthy people, for transplant patients it can cause PTLD . Either one would be very bad. The doctors are going to review all of the information, biopsies and labs. Tomorrow they wil have a plan of action. The plan could include: steroids, removal of the spleen ,radiation to the spleen, campath , or one of many numerous other options. this is going to be tough on the little guy, either way. Please pray harder than you ever have!! 11:02 am. Channel 10, here in Miami, is coming to do a story on Othello. I will let you all know more soon. 10:28 a.m. Mr Othello is approximatly 22 lbs now. He still has fevers and is swollen. The dr.s just saw him ,\; they are having him scoped from his ileostomy site and from below (for a rectum biopsy). Some chemeric tests are going to be done, as well as a CT scan and Xrays. Once the tests are done, it is hurry up and wait for results. Once we get results, treatment will be started. Please be patient and pray!! I held Othello as the nurse changed his bed sheets. He loked at me through squinty eyes, giggled and said "da da." 8:13 a.m. Othello's temperature has gone up to 102.C. He is miserable. He was up and down all night long. He did not get much sleep through the night. Right now he is asleep though. Which is unlike him, he is usually bright eyed and bushy tailed at 7 am every day. His eyes are swollen and crustied shut. His skin is bumpy and red and obviously itchy. Benadryl and tylenol have been given to him on top of his other meds. We are waiting on the dr. to do rounds. When they come we will know more of the plan of action for the day. Please keep you fingers and toes crossed and send lots of prayer his way. 12:06 a.m. Well, we arrived in Miami at 5:30 p.m. ast night. Othello was put in his room and immediatly seen by the Dr.s. In a few hours they will be doing scopes, biopsies, labs, xrays and more tests and such. They will then begin a regimen of HIGH doses of steroids. (more than likely) Othello has been battling a fever over 100.7 all day. He is miserable! His face is swollen; his eyes barely open. His hands and legs are tight too. His skin is sunburn red and bumpy. He has goop ooozing from his ears, eyes and nose. Othello has been crying and wimpering. But, he does still flirt with a nurse or two here and there. So, he is still spunky!! Thank you all for your love, support and prayers! Othello needs them desperatly again. He is hitting a bumpy spot in the road! Don't worry though, we are here to help him through it! Also, please keep Amanda in your prayers. She has been relisted for transplant. You can find more information at her website on the other links page. ______________________________________ August 26, 2003 p.m. Othello was admitted to Wolfsons this a.m. He vomitted and his rash is horrbile. He also has a feve brewing. Tomorrow we will be transported by ambulance to Miami. He has to go back to the transplant hospital. They want him there. I will let you all know more soon __________ a.m. Today I woke up to give Othello his meds. I turned on the lights and Othello looked like a red splotchy blob! His skin is COVERED in this "rash". It feels scaley, dry and bumpy. I DO NOT like this. If it is GVHD, then the treatment is not working. This rash is getting worse. It is on new places, more red and well just plain not pretty! I called Sheri (at GI here in J-ville) and she is going to talk to Dr.Evans and let us know what is "next." We may need to take a short trip to the Dr. office today. So, I am going to go get us all ready to go, just in case. I will update more laster, as I have more to tell.. I will leave up the yesterday update for you all....... _______________________________ August 25, 2003: Othello is doing well today. He has been laughing and playing all morning. His rash does look bad again though. From hour to hour it changes. It has always been like that. Overall though, It is less red and more riased. He feels like he has alligator skin. I have been applying the ointments and creams. His prgraf level was 7 last week. This week, we will see if they want to continue keeping it low. Darin and I are worried that if his immunosuppressants are too low, that he will go into rejection of his new organs. But, this is how they want to treat the GVHD that his rash is suggestive of. It has been 4 months and 2 weeks (approx.) since Othello's multi-visceral transplant! Can you beleive it!?? He is doing fairly well. He is at home and so playful! He even likes to eat a little!Daddy got Othello go eat 10 cc of formula BY MOUTH! With no spitting it out! Then mommy came behind that and gave a couple of spoons of mixed veggie baby food! Othello is making progress! Let's just pray he continues to do well! He just has to fight off the GVHD. ___ This week I will start something new to help fundraising efforts. Each week I will post a new original painting on here to sell. This week, one of my paitings will be available. It is entitled, Father and Son. Please check the column to the right for a picture and more information. ****Stormy got her transplant on August 23, 2003!!! Stormy, Othello's internet friend, got her Multi-Visceral transplant at Riley, in Indiana. She is the 1st M-V transplant at that hospital ever! The email from her parents says she is doing well! Please say a prayer for Stormy and her donor and their family!! To read Stormy's Page click HERE***** ___________________________ August 23, 2003 Othello is doing well today. He seems VERY happy. Giggling, babbling, thrwoing the ball and making me fetch it! Gramma Teri and Granpa Charlie gave him a walker. He touches his feet to the floor and laughs! As if to say it tickles. The carpet on the bottom of his baby feet is new to him. His abdomen is closing nicely. We have a dermatology appointment on Wednesday of this week. They will evaluate him and determine whether or not to do another Derma Graft or let it finish healing on its own. Labs will be done. His 4th to last zenapax infusion will be given. A doctor appointment or two. Some thereapy...we have a long week! I will update more later! ~Jennifer __________________________ August 27, 2003 Today we will be flying to Miami. Othello has to go back to Jackson Memorial. His rash is much worse, his white cell count is up, he was running a fever yesterday and today it is 38.6 C (101.5F), he vomitted yesterday. He is swollen and can hardly open his eyes. He seems miserable today; so unlike him, Last night he was up and down, crying and being uncomfortable. He is not his normal happy Othello self. Hopefully nothing too bad is happening. I am sure the lil guy will kick whatever this is out of his body and be okay! He is a trooper and a fighter. Mommy and Othello will be going to Miami. We are not sure for how long. Once we get there and get settled; I will update the web. (after calling daddy) Othello is being given vancomycin and rocephin(spelling). They are both antibiotics, that he has had before. They want to combat whatever is causing him to get sick. The nurse gave him some tylenol, he is sleeping. Restlessly sleeping, but sleeping. Wimpering, groaning. It is not fun for him I am sure. We will be medi-flighted to Miami around noonish today. I will let you all know more as soon as I can. Jennifer 08-22-03 This morning everything is going smoothly. Nothing much to do but play with Othello and clean house. Othello ate almost a whole jar of mixed veggies baby food yesterday! The stage 2 kind, he seems to like the textures better!! Right now, he is watching Barnie! He is talking to the T.V. and ignoring my attempts to play. So, I decided to come update you all. We did another Interview with First Coast News. They will be airing an Othello update Monday or Tuesday of next week. I will let you know! I will update more as the day progresses. I have left yesterdays post up, so that you can all read the later afternoon post! ______ 08-21-03 I wanted to ask everyone to take a moment out and send you prayers and positive energy to Christian and his mom Amy and the rest of their family. Christian passed away the morning of August 19. He was 8 years old. We are thinking about them and we know he is in a better place now. He is no longer struggling and suffering. We are keeping them, as well as the other transplant families in our hearts and thoughts. We all know, that could be and is our reality. It is hard for all of us to watch on as one of our transplant family members passes. Right now, there are many of the families still at Jackson, in Miami. As well as others world wide that we do not know. The children are fighting and being strong thorugh all of these trials. We hope and wish for the best for each and every one of them. Update for 19..August...2003 Othello is doing good today. The only thing that seems to bother him is HUNGER!! Yes, that is right. Hunger! He is off of his tube feeding for 4 hours a day. Near the end of the 4 hours he gets cranky, hits his tummy and cries. As soon as food hits that belly though, Othello is Snug as a Bug!! He enjoys looking right at you while you are talking. Then he will say something back, in baby babble. Right now his choice word is "da da". We are still monitoring him close. Thursday he has Labs and a Scope w/ biopsy of his intestines. We have to make sure the treatment for GVHD is not sending him into "typical rejection". Thank you all again for you love, prayers and support!! We would like to ask that everyone praying for Othello, please add Cory to your list!! Cory is a long distance friend of Othello's! His mommy and I talk every day! Cory is in the hospital getting some gene therapy and tests. He has to undergo a bone marrow transpalnt soon!! Please remember Cory and his family tonight in your prayers!!! Please keep in mind Christian, Amanda and the others in Miami at the transplant center. Currently we hear that Christian, who is 8 and has had 3 seperate transplants, is not doing well. He is hemmoraging out and is very unstable. Amanda is now back in the PICU with more complications. If you want to read more about Amanda click here. Please continue to pray for all of these children!! Othello sends his love!!!___________ Now an update about Othello: Today, Othello had a scope and labs drawn. His Prograf level is 7, right where they want it for now. When Dr. Evans did the scope, Othello's intestines looked nice and pink. There is no rejection of the organs that can be seen by the eye. Which is a good indication that he is not rejecting his organs. The GVHD is not confirmed. I called down to Miami. They said the rash is "suggestive" of GVHD. This is good, there is a chance that it is just a rash and not GVHD. Either way, they are treating Othello for Graft Vs Host Disease. I will keep you all updated! Othello has been showing signs of hunger while he is not on tube feeds! This is good, because it will help us in getting him to eat more by mouth. His home therapies will start next week!! Have a great day! Jennifer Update for August 18, 2003 Sorry for the late in the day update. I have been running errands all day long. Othello is doing well, considering his GVHD. You would NEVER know to look at him, that there is anything wrong. He has been saying "dada" all day long. Let me share a cute story with you: When I was talking to my mom last night, on the phone, Othello was watching me. All of a sudden he blurts out "blah blah blah." It was as if he was mocking me! It was adorable!! As for treatment..Othello's prograf intake has been decreaed again to 3mg/BID. He started out with 10 mg/BID. His Medrol is still at 5MG/Qd. Hopefully this is getting the GVHD under control! Labs and Scope are being done on Thursday! Hopefully all is on the up and up!! .... On the Fundraising end.... I am in the process of getting committess together for the "ball." I will let you all know more as I get it ready!! Sept. 20 is Singing for Othello at Tip Top Tavern. You can download a flier by clicking below.. Update for August 16, 2003: Today Othello took his FIRST trip to the park!! His very first visit to the park was fun fun fun! He did so well. Othello sat on mommy's lap and slid down the slide a few times. He cackled!! We sat under the shade tree while Sebastian and cousin Jaden played on the swings, slides and monkey bars. Othello sat on a beach towel with Gramma Helen. Sebastian and Jaden, Uncle Brian, Gramma Helen, Darlin', Aunt Mandy, Granpa Charlie and Gramma Teri were all there with Othello and Mommy for the BIG day! Daddy had to sleep though =-( But, next time! Daddy will SO BE THERE!! I am sure he will love watching the lil guy on the Big Kids slide! Othello got to take a stroller ride around the duck pond in his 3 wheel jogger! He loved it! After about an hour and a half, Othello was zonked. He feel asleep on mommy inside the car. He nuzzled up to her and drooled while waiting for time to go!! Hope you are all doing well! Othello is enjoying himself! GVHD cannot stop this lil trooper!! Bye for now!! ______________________ Update for August 15, 2003 Othello went to Ped Surgery today for pre-op appointment. They have determined that he does not need a new port. It flushes well, but you cannot get blood return. It is a-okay. There is a sheath around the end preventing aspiration. This may be caused by the numerous lines he has had. YEAAAA!!! No surgery for the little guy. His rash does not look as red now. Maybe the decreasing immunosuppression is doing its job!!! We hope the GVHD is under control soon! Othello is a tough little munchkin! He will fight with everything he has got!! Othello is talking more today! gaa and dadadada's. It is adorable. He looks at me and acts as if I can understand his babble!! Well, have a great weekend everyone!! Update for August 13, 2003 11:22 a.m. Othello had his speech, occupational and physaical thereapy evaluations thia morning. He is now being seen by Therapeds. They are an in home therapy service. Better than going to the Children's Clinic. We try to avoid as many germs as humanly possible! Here is the plan for therapy: Othello is going to work on his eating skills and sounds for speech. For PT and OT he will work on his strenght in his arms and legs. We want this boy crawling!!!! (He is just about too heavy to carry) Medication changes...His prograf and medrol have been reduced again! The Dr. are trying to lower his immunosuppression. This is so his body can fight back and hopefully reach some common ground with his "new guts". We are going to get the GVHD under control! Othello will beat this odd like he has all the rest!! The little guy is so happy. He has been saying "bubble" a lot today. All the while, he is gnawing on his lil hand! DID YOU KNOW: (obtained from www.unos.org) Myth: Having "organ donor" noted on your driver's license or carrying a donor card is all you have to do to become a donor. Fact: While a signed donor card and a driver's license with an "organ donor" designation are legal documents, organ and tissue donation is always discussed with family members prior to the donation. To ensure that your family understands your wishes, it is important that you share your decision to donate LIFE. Update for August 14, 2003 4:00 pm Othello is back at home. The CT Scan went smoothly. He is still sleepy from the sedative they gave him. (He is soo floppy) Tomorrow a.m. we go to speak with the pediatric surgeons about his new port placement! Othello also gets his labs drawn tomorrow. This will determine if his meds are to be "tweaked" again. His GVHD induced rash looks itchy and uncomfortable. But, Othello ignores it well, if it is. It is concentrated in a few areas...It comes and goes... 10:24 a.m. Othello is going to the Children's Hospital to get his CT scan done at 12:30. They are going to check for a place to put his new port! This way, when he goes into the OR for the port, they will have a better idea of where to place it! The little guy has been talking a whole bunch today. He is making new sounds..Goo, Faaaaa, Da, Maa, Boo, Bubble, and random other babbles. The Art Sale and Masquerade Ball will now be one entity. I will give more information soon!! Othello is trying to type to you all! He loves to fiddle with the keyboard!! Sebastian is at kindergarten right now. When I dropped him off his teacher said he was brilliant! Maybe that is why he is so hyper. He does get bored a lot. He already has a lot of the kindergarten stuff down pat! We will update his site when he gets home this afternoon! ___________________ August 12, 2003 FINALLY I CAN UPDATE!! The nice man, Tom, at tripod fixed the problems they had at their end! p.m. Prograf level is 12!!!! That is so much better than 36. Othello DOES have GVHD. The plan of action: Lower his immunosuppressive drugs and steriods. This will allow his own body to fight back a little. Hopefully it is just enough to cancel out the organs attack on Othello! Once we reach a happy medium, Othello will be a-okay. No hospital stays for Othello yet. We can help manage the GVHD at home. The Dr.s will keep a close eye on labs weekly and scopes too! Another derma-graft will be done too. It takes a few applications to do the job! Othello and Sebastian are playing "gutter ball" (a.k.a. bowling) Sebastian is the bowling ball and Othello is the Pin! Sebastian runs by Othello and says GutterBall. Then Othello laughs! Tomorrow Othello starts Physical, Occupational and Speech therapy, at home! Therapeds is coming to do the in-home therapy. Othello is much more relaxed here and there are less germs! Thanks all for your continued prayers!! a.m. Sunday and Monday Othello did not seem to feel well in the morning time. He spit up a little each day. 20-30 cc's. His ostomy output was approximatly 300. Still is normal ranges. No fever though! The Dr. in Miami informed Dr.Evans that Othello does have GVHD. I am going to request more tests here in town! They conflicting answers we have gotten from the Miami trip are unreliable in my opinion. So does he have GVHD or doesn't he? We will know more soon, hopefully. Some of his meds have been decreased!They will continue to taper off too! Othello has been laughing and playing all day long. He is soo giggly. It is 11:20 and he is now napping! We have been doing some "tummy time" to help with learning to crawl! Studies show (according to Darin's co-workers at St. Lukes) that crawling first helps children in learning math ! (go figure) Friday, Othello will go n for the port-a-cath to be removed and a new working one placed!! WOOHOOO! I have been trying to educate some people on gastroishisis and organ donation. It is sad when they have misconceptions and are unwilling to educate themselves. If anyone would like more information about organ donation..please go to www.unos.org , for other info...go to the links page!!! Want to know a neat new fact I learned.... • Did you know that transplant recipients can be considered donate their "native" organs? (in Othello's case he will be 100 before that is even discussed.) rday August 9, 2003 Othello is wiggling around and babbling to his stuffed animals!!! It is so very niceto be home again. Othello and I drove about 5 1/2 hours back home yesterday. Othello does not have GVHD. He has Atopic Dermatitis. (really sensitive skin, probably reacting to his mes, kinda like eczema) We have some creams to put on the lil bugger!! So far, so good. No rejection still (hopefully things will stay that way) Please keep in mind that this is a crazy rollercoaster ride!!! We will keep you all informed of the twists and turns Othello takes as often as we can! Luckily nothing to extreme has occured. We pray it will not. Thank you again to everyone that has helped us out and prayed for Othello. He is definately being watched over!! XOXOXOXOXOXOXO ~The Smith Family~ P.S. Jacob went home from the transplant center!!! So did Amanda!!! AND Terran!! Yeaahhhhh!! Ian, Chelsea, Josh, Christian and Sarah are working on getting well! Please keep them in your thoughts and prayers! Especially Christian, right now, he needs all the love and support you can send his w august 8, 2003 Most recent posts first... 1:44 pm Well, KK just told me we are discharged TODAY. We will be leaving for home soon!!! WOOOHOOOO! 9:44 a.m. Rounds were just done! Dr S (I'm not sure how to spell his name) says we can leave tomorrow! (Well, this afternoon..But, I am not driving 5-6 hours in the night with Othello!) So, we will leave Saturday a.m. and go HOME!! The biopsy came back negative for GVHD! So, we go home with some topical ointments and creams and just watch the rash. Woohooo. We get to go home to daddy and sebastian!! Othello is a-okay! A derma-graft and a week later...plus many many blood draws...he is going home! 8:00 a.m. Othello got his dermagraft (thank goodness) It was a fairly short, bedside procedure. The dermatologists were very informative and plesant to have working on Othello. Kudos to Dermatologists!! After a long day of hurry up and wait. I still received no real definative answers. I was told a few times that the Doctors woud be in to discuss the results. Well, i did talk to a dr. (a fellow, because the other dr.s were in the OR doing a new transplant) He "did not know" anything. This is quite discomforting. We have been here for a week. Still no real indication of what the rash is or isnt from. Darin and I, as well as the many of you keeping up on Othello, want to know what is going on. If their is something that NEEDS to be treated, we would have liked to have treatment started by now. Most of the tests were not done until mid week, they should have been done when we atrrived. If it was urgent to get us here two days sooner, it should have been urgent to get ALL of the nescessary tests completed. I am not trying to complain. But, I am anxious to know what is going on mith my baby boy. If nothing is wrong, I would like to take him home. It is better there for many reasons. Mainly, he will not catch some random infection or virus that lingers in the hospital. If he isnt ill, we want to keep it that way. I will try to explain my point of view to the dr. during rounds. Hopefully they will provide me with some more information and a decision. One way or another..Does Othello have something that NEEDS to be treated in the hospital or can he go home to wait for results in a safer, cleaner, less germ infested enviorment? We want him to be well. If there is a problem we will take him back to the hospital. I thinnk our track record so far speaks for that. We love Othello and want the best for him. Darin and I are his voice, his advocates! If he needs something, we will do it. If it is unnecessary...we will try to eliminate it. Well, i will update later on...as more information leaks my way. August 7, 2003 3:20 pm Dermagraft is done. It looks like a tiny piece of mesh. The dermagraft is suppose t stimulate Othelos skin cell growth. He will require a few more applications. This is normal. We have no more word about the biopsies. They have not given us a definate on anything. I am about to ask again, we need some answers. If he needs treatment, it should be underwayalready. We have been here for 6 days!!! More later.... 11:30 a.m. There is a BIG box in Othello's room. It says: "URGENT HUMAN TISSUE ENCLOSED" Yeahhh. His derma-graft is here. If you want to learn more about a derma-graft click here! Thedermatologists are on their way up to cover the wound with the graft!! yipppie. We are still waiting for Dr.Tzakis to let us know whether or not Othello has GVHD. Keep praying everyone. I'll will update you all as soon as I am given information . 9:24 a.m. Prelimiary results say: the skin biopsy says it may be GVHD. The rectum biopsy seems to say no it isnt gvhd. This means....wait for Dr. Tzakis to review the biopsies and we will get a definate answer this aftertnoon. Hopefully things will come back favorable! Be back with updates in a few hours! 9 a.m. We are waiting for rounds. Once the Dr. comes in, I will hopefully find out the pathology report. As you know, They took a biopsy of Othello's rectum yesterday...To determine if he has GVHD. We are hoping that it is not!!!! GVHD is when the donor organs attack the host (in this case Othello's body). At 2:30 the derma-graft should be done. Uness it is pushed back AGAIN. Which , I hope not! If all goes well, we should be home soon! Please keep praying. And i will update the website as soon as the results are in. August 6, 2003 1:00 p.m. The dermagraft has been moved to tomorrow at 2:30. This is because the dermagraft itself has not gotten here. Sigh. Dermatology said they will remove all the messh, stitches etc. and then place the graft. The scope will be soon. They will take a rectum biopsy. More blood was drawn too. Twice today. I am getting nervous. But, I am still hopeful that it is not GVHD. I am scared! Othello has been through sooo much. He does not need any more to happen to him. But, we did tell you all that this will be ups and downs. The rollercoaster ride is starting up again. Please pray and be patient! _______ It is 9:10 a.m. We are waiting for the doctors to do rounds. When they get here I will ask some ?'s and get some answers, hopefully!! Othello is suppose to get a scope w. rectum biopsy today. It will help determine if he has GVHD. Hopefully not!! they also drew labs twce yesterday and once so far today. At one he will be getting his derma-graft. Peds surgery will also be coming in to let us know when they wil replace the port-a-cath. I will also be asking if we can be transferred to Wolfson for treatment( if he does have GVHD) His UTI has not been treated yet. they were SUPPOSE to start the IV antibiotics last night, per dr. orders. But, it did not happen, even with me reminding the nurses a lot. I am sure there is a good explaination, I just have not been given one! I will keep you all updated. Hopefully with GOOD news aug 5 today has not been too eventful. we are still awaiting some results. othello and i have been playing, dancing and being bored. we did see a funnel cloud out of the hospial window!! the dermatologits and pathologists seem to think it is gvhd. to learm more about graft vs host disease click here. we are hoping it is not!! gvhd occurs when the graft (the new organs) attack the host (othello) tomorrow a biopsy of his native colon (the little bit of his own large intestine he had) will be taken to help dagnose the GVHD, if that is what it really is! he will also have his derma graft done!! WOOHOOO!! a new port will be placed sometime this week also! i will update you all as soon as i can. aug 4 okay here goes.... the dr. did their rounds. the derma graft has been rescheduled to wednesday at 1 p.m. also they are going to do a scope and biopsy of his rectum. to help in ruling out gvhd. in addition, the dr.s are going to check for syphllis (yeah i was confused too) apparently, the transmissionnof syphillis has occured during transplantation before. we hope that neither of these is the case with othello. on top off all of this, othello has a uti. a urinary tract infection. poor baby. antibiotics will be started to get rid of the uti. the port will be repaired too. dr. tzakis said they will take it out and give him a new one!! yeah, no more clotted port! this trip started as a derma-graft only trip. now it has escalated into more!! well, more as i know it. August 2, 2003 We are in Miami. Earlier than anticipated. Friday afternoon we recievd word that Othello's prograf level was in the 30'ss. It is not suppose to be THAT high. So, that combined with his rash, propmted a earlier departure. Othello was admitted to Jackson friday night. Labs were dawn and we were settled in. the dr. say he looks okay, all his numbers are good. The sermatologist came to take a biopsy. He took a chunk out of Othello's right shoulder. He did not like that too much. I am sure it hurt!! The rash is almost non-existant. But, we do now have cream for it. Prograf dose is not 4 mg instead of 8 mg. He stil gets is twice a day. Can you all believe the little guy is absorbing things so well!!! It is amazing. His scope came back negative for rejection. So still, no rejection so far!!!! Monday or Tueday we will get the dermagraft done and the skin biopsy results. Then hopefully Wednesday we will be home!! More later on today.. P.S. Mommy and Othello miss Daddy and Sebastian. =-( Othello says he wants to drool on his daddy's shoulder. Sorry lost the Aug 3rd update August 1, 2003 Sunday (the 3rd) Othello and Mommy will be leaving for Miami. We will be there for a week or so. Othello will be getting the derma-graft over his wound. Also, the port-a-cath and G-tubes will be fixed. The rash will be examined too. Hopefully he is not having any weird reactions or rejection!! There is no fever....So things seem okay. We picked up his insanely priced formula today. ($ 36 a box..he uses 1 box a day!!)We also took a leisurely drive..so we didnt have to go home too soon! We are always couped up there! The updates will not be daily starting Sunday. I will give updates as often as I can though. I may call Daddy back home in Jax to update the page!! We will see though..Daddy works a lot and has to sleep sometimes!! hahah. Rmember, we still have bracelelets, books and other fundraisers going on!! please pass the word along!! We are still quite a way from reaching our 150,000 goal!! I will get the exact tally this aftenoon from COTA, so I can let you all nkow of our progress!!! Have a great day!! July 31 From Othello: Mommy says it is a workout to go anyplace with me. She is so funny! Mommy has, lemme count, 1-2-3-4...FOUR bags to carry, plus me (and I'm a chunk)! It is almost time to go to the day hospital. I am going to get scoped and infused. That sounds scarey! But, I have done it before. The doctor is going to put a camera with a light on it inside my intestines. He is going to look at them and take a few bites out of them with a claw looking thingie! To make sure I am not rejecting my new organs. Whatever that means. Next I will get blood drawn for labs. (How are they gonna make a lab from my blood? silly doctors) and then some medicine put into me. So I dont get sick. I don't like being sick! Well, Mommy is ready to get me into the car!! VROOM VROOM! Bye! July 31..P.M. From Mommy: We went to the appointment today at 10:oo. Othello and I were sent from place to place, until finally someone realised I knew where I was suppose to be and telling them ALL ALONG! So, he got scoped and biopsied at the GE Lab. Everything looked good. We will know more when the results come back. His port-a-cath is clotted!!!! Never been used and it does not work! So, Othello was stuck a few times to get labs drawn and for his infusions! He has bruises on his arms, feets, hand...poor thing! Sunday we drive to Miami. Monday he will be admitted to Jackson Memorial. We will get the derma-graft done. The G-tube will be looked at at fixed. The port-a-cath fixed or replaced. His skin rash examined... And much much more... (I hope not hahah) We expect about a weeks stay! Updates will be few and far for a week or so. Please be patient... July 30 Still no word on the Miami trip. Hopefully we will hear today about when Othello's presence is requested at the transplant center. (For his derma-graft) Today his nurse came to do labs and give infusions. Othello has a portacath now. But, that didnt help. She was unable to get any blood return. Maybe it is placed wrong, maybe there is a clot...we do not know. But, it did not hurt. We had over the counter cream called elemax. It numbs the skin. You glob it on a half hour or so before a stick and viola!! no stick pain! Try it when the kids go to get their boosters, it works great! Only drawback...a tube is 13$ and it only lasts two applications!! Tomorrow we get to travel to Wolfson's Children's Hospital to get labs, infusions, scope and biopsies done.. Woohoo. An 8 hour hospital day...here we come! More later...as we know it! July 29...... I spoke with Barb (from Liver transplant in Miami) at 4:30 the 28th. We may be spending a few days in Miami next week. Othello needs to get his dermagraft. But, insurance will not cover it unless he is inpatient!!! So, Barb is trying to pull some strings and talk to some people. Hopefully it will just be a day or two at most down there. While we are there, the Dr.s will look at Othello's g-tube also. Maybe they can suggest something a little better than "take it out every day or so for a few minutes and let it close a bit". When I speak with Barb tomorrow, I will ask if we can come Wednesday of this week instead. Because I really want to be here for Sebastian's first day of kindergarten!!! I do not want to miss that important milestone in Othello's Big brothers life!!! So, maybe we can get it done this week as an outpatient! That would be optimal! Also, he still looks red and splotchy. I will call GI here tomorrow and see about a dermatology visit at Nemours. If not, maybe Wed we can go to Miami for the derma-graft, G-tube fix, Scope, Dermatology and all that jazz. One swoop!! Please keep your fingers crossed and prayers coming!! We will know more maybe wednesday. Hopefully we can go to Miami this week!!! July 28, 2003 Sorry No update for yesterday. But, no news can be good news!! YEAHH! Well, Othello's G-tube is leaking. Yes, still. I took it out for 15 minutes yesterday. It helped for last nights meds. But, that is all. I do not want to have to remove it 15 minutes, a few times a day. That is just ridiculous!! Anyone have any suggestions?? Othello looks a bit splotchier than usual. The splotchiness blanches okay. But, it still concerns me. It did not go away with benadryl last night. I am putting in a call to GI today. I am just concerned about GVHD. (Graft Vs. Host Disease) That has been ruled out before; but I am sure it can appear anytime, like rejection of the organs. So far no rejection. Everything looks a-okay. (besides the leaky tube) Othello's output hovers around 150-250. He is babbling, yelling and eating his binky! He has begun to clasp his hands together, fingers intertwined!!! Here is Othello's and Mommy's schedule for the week: Monday: Pick up meds from pharmacy Tuesday: Physical Therapy Wednesday: Labs and infusions Thursday: Scope and Biopsies Friday: Pick up monthly formula from Pharmacy July 26, 2003 Well, Othello is doing good. He is fighting his nap, quietly though. Yesterday he skipped nap time entirely. He did go to sleep very pleasantly last night too! His Mickey Button is leaking again. Not as bad as last time. The Dr. suggested that we remove the button , leave it out a fwe mintues, then put it back in. Then voila! No more leaks! (At least for a day or two) Mommy had to take a trip to the hospital last night. Daddy was in charge of the baby and Sebastian! (Mommy was AMAZED that when they brought her back home, that home was still there!!) Mommy is better now, and back on the job. Until tomorrow..... July 24, 2003 Sorry Everyone. I accidently Lost this update. Basically it said that Othello's G-tube was leaking and we had to get Peds Surgery to pull it out, let to hols close a tad bit, and reinsert it. Snug Fit!! July 25, 2003 What I thought was going to be a lazy week, isn't. Typical! I had to tak Othello to the Peds Surgery Clinic to get his Mickey fixed. Now he does not leak around the G-tube. All his meds are going in just like they are supposed to. Today I have to go pick up Othello's meds. Sebastian (BigBrother) is spending the night with Gramma Helen. So mommy and Othello have mommy baby night. Which means, clean clean clean clean and clean. Othello is playing with his baby piano. He seems to like when it lights up and plays beethoven. Oh, to be a baby again! There is a new addition to the page. Random Quotes. Here I will add random things people say about Othello, to Othello , etc. Cause there have been some funny ones. July 23,2003 Nothing to do today! What an uncommon thing for Othello. No doctor appointment, no thereapy, no labs! Just a lazy day at home. His next scope, labs and dr. visit are next week! So, as long as nothing unforseen occurs, Othello has a tad bit of a window for vacation. (i.e. drooling on himself while sitting in his boppy!) His G-tube siite is STILL leaking. Hopefully the Dr.s will decide to give him a shrter one. This may cut down on the leakage. Othello is playing with his stacking rings. He seems to be slowly getting up to speed with his age group. His eating is coming along. We have to lay him like a baby t get him to swallow pedialyte. Sebastian and Mommy went to the Sprinkles childrens museum in Mandarin. The nice people there donated a pass for the family! He made a puppet for Othello! It looks like a bird. Right now he and Darin are swimming. He needs some be a kid time before he starts kindergarten next week! Especially with all the attention he used to get being infringed upon, because Othello has been so sick! More later ______________July July 22,2003 a.m. Othello visited Shari at the GI clinic today. She is very pleased with his progress. He has gained about a 1/4 lb. since his last weigh in. She is also going to discuss, with Liver Transplant in Miami, decreasing some meds. (the steriods and the Red blood cell booster, Medrol and Epogen) He has been playful today. Babbling a lot and very active. We will let you all know how things are going. p.m. I talked with Barb from Miami this afternoon. She is going to contact Shari (in Jacksonville) and discuss the wound on Othello's abdomen. He needs a derma-graft to cover the wound. It is healing, but not as quickly as we would like. The procedure may be done here in Jacksonville, depending on the time line and the dermatologit at Nemours. If need be. we will take a couple days trip to Miami to have it taken care of. ROAD TRIP!! Okay, maybe not. But, it would not be bad. A leisurly drive down south with Osmellio (as Bastian affectionatly calls him) Also, his mickey button (g-tube) has been leaking excessivly from around itself. Stomach acids, food, meds, and whatever else wants to seep out has been. So, he may need a new mickey button. A little shorter! Hopefully that will be soon too. We don't like the excessive laundry! More later.... ~Jenn july 20 2003 othello is loud and well! he is babbling up a storm. (no lie, there is lightning outside) he he playing with his blue teddy bear. (well, eating its foot) nothing too exciting to report! he is feeling well, acting good, looking cute. no real medical news. same ol' same ol'. no rejection so far!yeahhhh! he did drink some pedialyte for daddy yesterday. with NO problems. no spitting, no choking, he just drank it right on down!! WOOOOOHOOOO!! we are still in need of art work and recipes for fundraisers!! please help out! also, we still have books for sale. July 18, 2003 Note from Othello: This a.m. Sebastian and Mommy were on Channel 4 morning show! I got to watch it and giggle. My brother is silly, he did not stay in his seat! They were showing off the book mommy and Sebastian wrote for me! I am doing good. My labs will now be every other week!!! The Dr. thinks I am doing well. My LFT's (liver function tests) are normal! The high number the other day is actually down!! It will take a while to get back to "normal" from when I had my transplant! Thank you everyone for thinking about me, helping me and praying for me!! I am going to go watch telletubbies now, That LALA cracks me up!!! BYE Love, Othello July 17, 2003 Othello went to the OR to get his portacath. We were there at 7 a.m. His procedure started at 9:30 a.m. He was given a port-a-cath. It is completely under the skin. It is used to draw blood from and administer meds through. This will be easier for the RN and less painful for Othello. We have cream to numb the area before the RN draws labs or gives him an infusion. There is a lower risk of infection with a port than with the broviac he used to have. He has been sleeping pretty much since the surgery. We ARE at home. Have been since around 2:30 p.m. His throat is a bit scratchy because he had to be intubated (breathing tube). His cry will come back though, I am sure of it!! Dr. Taufiq did his endoscopy and ileoscopy. He said the stomach and intestines look good. He did not SEE any signs of rejection. Biopsies will be reviewd today or tomorrow. All but one of his Liver Function Tests (LFT's) came back normal. The GGTP came back at 66, the norm is 50. GGTP is an enzyme made in the bile ducts or tracts of the liver. An increase could indicate a blockage or damage to the bile ducts or even rejection. They are not alarmed by the level, but will keep an eye one it. Tomorrow 7-18, Sebastian and I will be on Channel 4 morning show, in the 7 o'clock hour, to talk about "My Brothers new guts". It is LIVE!! Sebastian is 5! So...this will prove interesting..heheh. More tomorrow!!! Have a great Evening! July 16, 2003 a.m. Othello had labs drawn. It took two sticks! Poor thing. His veins are not wanting to give up the blood. At 11:00 a.m he is due to go into speech thereapy. We have some baby food, a spoon, bottle and some pedialyte to take with us. We are going to see what we can do to get him up to speed on the whole eating thing!!! wish him luck. Later this afternoon we will know his prograf level. Hopefully it has come back down to a normal range. Also, his output has gone up. It is best being 100-200. That is what it has been for a while. Now it is hovering around 250. Not bad, but not optimal! I will update more this afternoon, when we return from thereapy! p.m Well, Othello met the speech therapists. They did their eval and decided: Yes! Othello is not eating by mouth as well as he should!! heheh. He did swallow for the lady. But, he changed colors when she fed him. The assume this is stress related. We will be workin on his aversion to food and attempting to get him on bolus feeds instead of continoius. We need to convince his stomach that it is hungry!! We read Amanda's website . (A multi-visceral transplant patient we met in Miami) She is not doing so well! Please check out her page and send her a get well email. Keep her in your prayers, this little 8 year old girl needs all the love and support she can get right now!! _______ July 15, 2003 Today Othello was suppose to have labs drawn. But, he was stuck 4 times and no blood came. Poor thing. He has been stuck so many times that he is all dried up. He has scar tissue forming in knots near the bend in his arm. I am sure he is not very comfortable. Tomorrow we have yet more to do!! WOOHOO!! Labs at the clinic and then Speech Therapy. I am sure lil punkin will do okay. He does not swallow well still, so then again, he may need some work!! He is playing with a couple of new developmental toys recommended by the therapist. A ring stacker and a bowl with balls in it that he can get out and put in. Othello is sitting in his boppie playing right now. Well, we hope you all are doiung well! Othello is. So far no rejection, nothing MAJOR. Hopefully it will stay that way. Thursday is o.r. visit day for the port a cath and the scopes. All should go well.. More tomorrow.. Jennifer July 14, 2003. a.m. Well, Othello is doing good. He is taking all his meds like a good boy. This afternoon, Othello has to go to Occupational Thereapy. They are going to work with the punkin. Help him to get up to speed. Tomorrow A.M. Deb will come draw his labs. He is loving his swing again. He giggles and smiles. His laugh is contagious! I think he needs a piano. He likes to hit things with his cute lil munkee fingers and make noises. he is soooo cuuuuuuuuuuute!!! On the fundraiser front: Hmm. Books are for sale. Pins are still for sale. We are getting an ART sale planned. Othello's Store is open. And Much much more to come. P.M. Othello did okay at his thereapy appt. He is at a 5-7 month old level developmentally. They say it is appropriate seeing asn that he spent 6 months of his 12 in the hospital! We are going to get him a ring stacking toy and a bucket with things in it. They say it will help him!! July 10, 2003 Hmm, let's see. We went to Nemours today for another abdomen ultrrasound. Results will be in tomorrow. IT is just a base line, so GI knows what they are working with. Next week he gets his port a cath, zenopax, endoscopy, ileoscopy, labs, speech thereapy and occupational therapy. (That is so far, things will undoubtedly be added.) Othello now has his own P.O. Box. If you want to send mail you can do so there. The address is on the left side of this page. Feeds are now at 45/hr, 22 hours. Epogen has decreased to 2x per week. If he does well, it will decrease again. (Yeah less shots) He is grumpy today. Teething! Yup. July 8, 2003 Let me start off by saying:Othello is okay! Now here is why the bit of info. This am, while on the way to the doctors office, we were hit from behind. While trying to stop, another car bumped into us. Othello cried for a moment and then began to laugh at the traffic going by. Then,the paramedics came to check out Othello. Daddy showed up to take the munchkin to his doctors appointment. All the while, I got to have a fun filled day dealing with the Liscence and Tag angencies (long story, wont go into it here) Othello is fine....He has not gained any weight. The Dr. and Daddy decided to Up his feeds to 42 an hour. Yummy! His Physical Thereapy was rescheduled. And his cath placement will be on the 17th! I hope the bad luck stops soon. There is not enough advil on the planet to help all these headaches I keep getting from all the stress!!!!! July 9, 2003 Hello everyone. Today is much much much better! Did I mention it was much better? Othello had labs drawn this a.m. by Nurse Deb. He likes her, she makes him giggle!! We are going to pick up the "books" today! We were suppose to yesterday, but we were in that fender bender.(no we were not hurt, Othello laughed when we were hit after a short whine.) Tomorrow Othello has another abdomen ultrasound scheduled. Next week, Occupational therapy, speech thereay, O.R. visit for a portacath, endoscopy and ileoscopy w/ biopsy. In addition he will have labs drawn. No change in his weight. So the Dr. has incresed feeds to 45CC an hour for 22 hours. We have to fatten lil munkin punkin up! (that is what daddy calls him) His Epogen dose was changed to 2x a week instead of 3x! WooHoo, one less shot per week! Othello now has 10 teeth! Yes 10, with 5 more on the verge of breaking through. Is this normal at 1???? July 6, 2003 Othello and Sebastian have been hanging out and playing. We have our digital camera back (it was being repaired) So, I am able to add new pictures! YEAAAH. Let's see. Sebastian and I are going to be coloring and working on a scrap book for each of the boys. We have lots of construction paper that was given to us. Tons of markers/crayons/pencils. Darlin' loaned us her rubber stamps and cool cutting scissors. We have a bajillion pictures. Gobs and gobs of cards. We even have random clippings from newspapers and website printouts. We are going to get CREATIVE!!!!! Don't forget to check out Othellos store . There are cool shirts, lunchbox, bags, etc. that you can buy to help out Othello!! Also, if you are interested in a "My brothers new guts" book written by Sebastian and Mommy, please email us at othello@allothello.com . We are asking for a 5$ donation for the book. Come back soon for more fundraiser information!!! July 4, 2003 HAPPY 4TH OF JULY from Othello and family. We celebrated the day by sleeping in late and taking a few naps throughout the day..hehehe. Freedom to sleep when you want! WooHoo. Othello is doing well. Deep belly laughter is what he has been giving us today. His face lights up, the ends of his lips curl into a huge smile and his eyes squish in delight. I found myself wiping tears a few times today. We still have our precious little Othello! We are so lucky. So blessed with this miracle! Talk to you later...XOXOXOXOXOXO July 3, 2003 This morning Othello went to the Childrens hospital to get an IV. Dr. Evans was able to get one in his lil foot. Othello objected very loudly!But, his fussing did not stop the fact that he had to get his infusions of zenopax and cytogam. We spent 6 hours in the outpatient surgery recovery area. (That is where they did his infusion) We read magazines, sang songs, watched people, played with toys, and took a nap. It was a very exciting day!!! The Dr. will schedule an o.r. visit to put in a potacath soon. So lil guy does not have to go through a kajillion sticks. Tomorrow is the 4th. Yeah fireworks! We have decided to stay in for the evening. No fireworks for Othello in person...on T.V. maybe. July 2, 2003 p.m. Othellos nurse came to give his infusions. She and another nurse were unable to start IVs on the lil guy. He screamed and cried. It was so heart wrenching. Tomorrow a.m. we have to go to Wolfson's to have the Dr. put in an IV in the procedure room. They are going to schedule a trip to the or to get a portacath put in. It is a semi-permanant line that can be used for labs and infusions. No more sticking. I did not think he'd be this hard to get an iv started on. Well, I will let you all know more soon!! July 2, 2003 a.m. Scope and labs all look good so far. Today nurse Deb is coming out to give Othello his infusions. She has to start an IV and give him 3 meds. Two are given once a month,the other one twice a month.I am sure he wil not like the needle, but it is better than having a central line everyday!!! Othello is sitting in his boppy. (A pillow that is horseshow shaped) He seems to enjoy it a lot. He is giggling and smiling. Sebastian is doing some crafts. I am doing more research on the web. Daddy is sleeping! See, we get a few minutes of peace every now and then!!! Tomorrow I have to go pick up the rest of his formula. It is 6$ a packet. He uses 4 each day.24$ a day for formula!! We can only get it from a pharmacy, because it is prescription only!! Speaking of formula, Othello is now on 40cc an hour for 22 hours. He now gets a 2 hour window each day!!! YIPPIE!!!! July 1st, 2003 Othello went to the doctor today. He had labs drawn, a check up and a scope. Everything looks good. His levels are a-oaky. His intestines look pretty. His output is steady, he is not showing any rejection either. Othello had a chance to see a few of his nurse friends at Wolfson's. We were already at the hospital having the scope done, so we stopped by. He seemed to surprise everyone with his lack of jaundice and his extra 5 pounds of cheeks!! Things are going well so far...