Saturday, November 24, 2012
It is like a new life here at Brent's Place. Dillon is eating, playing, laughing, taking all of his meds without much trouble....not vomiting, not napping, not having nausea. Yesterday we went to GameStop to trade in a couple of games that he does not like for his DS that the hospital gave him.....then we went into target and he tried on several pairs of pants because he currently only has 2 pairs that fit. This is such a huge deal....even at his best Dillon truly dislikes trying on clothes of any sort, even things that he loves and desperately wants to own. The past 2 nights I have chosen not to hook up his TPN because he has eaten several times throughout the day, including regular meals with the family and even a bowl of popcorn last night during a movie. An absolute Dillon classic favorite is Caesar salad with homemade dressing (a modified version without the egg yokes, as he is not allowed to eat raw things)...this dressing is super garlicy, has plenty of anchovy, and is creamy. He has had that 2 days in a row. He takes a Tums beforehand to offset the possible garlic heartburn-type symptoms.
Sean has been well...better than well. All the extra sleep at his parents' home has done wonders for his energy....he is having a great time here with all of us.
We might go to another movie today. Cousin Miel told us that Wreck It Ralph is a great movie so we might go do that.
Today's big announcement......Luca is going to stay with Dillon and I for this entire week. He has begged and begged for a 2-week stay.....his main agenda is that he wants to be with me for my birthday, which is Wednesday. So Sean is heading home tomorrow and I get to keep my 2 little chickens. Denver has tons of holiday lights and activities and I thought we could do a few of these now (early in December) before they get too busy and crowded and unsafe for Mr. Pickle. We are all looking forward to the fun.
Dillon has lab work Monday and a clinic appointment. They will check all of his levels and re-inspect his rash (which is the same as before, no change at all...which is good right...it is not worse). On Wednesday he has his PET/CT scan...which he HATES because they have to access his port (you all remember the needle trauma at UNM so long ago). It will be great to have Luca here to distract him and keep him company. The reasoning behind the PET/CT is essentially a final check to make sure that there is no cancer activity anywhere in Dillon's body. No one thinks there is and no one expects to find anything but after his crazy start to this whole journey they just want to be triple sure that he is all clear.
Hey...a special shout out to THANE.....we got your package...AWESOME and we will be playing both of the games today. Thane, you are such a special friend and we miss you terribly!!!! We look forward to playing some basketball with you buddy!!!!
Saturday, November 24, 2012
Thursday, November 22, 2012
Day 64....Happy Thanksgiving
HAPPY THANKSGIVING!!!!
of all the years in my life this one is the one that I have the utmost thanks for everything in my life. My boy is healing, my family is intact and connected and supporting each other....and then there is all of you out there sending light and prayers and energy and angles and good wishes and all the powerful feelings that come with supporting us...so THANK YOU THANK YOU THANK YOU !!!! We truly feel the most blessed this year. We cannot say enough to all of you supporters. You have been an integral part in helping us get through this journey and we will be forever grateful to each and every one of you!!!
Thursday, November 22, 2012
Sean is back in Denver today. Our sweet little family gets a long weekend together.....sigh....we all need that so much for ourselves individually and as a cohesive unit.
Yesterday Dillon had a quick clinic appointment (which was not scheduled but they asked us to come in) because he developed a full body rash. The outcome of the visit was a list of reasons why the rash could be happening: It could just be sensitive skin. It could be GVH of the skin, which is concerning because he is already on treatment for the gut GVH and if it the skin is breakthrough then it could be a very strong case. It could be an allergy to a new med he started on the day he was discharged. It could be the beginning of a viral infection with a cold or flu being the most likely (apparently in some immunocompromised people the first sign of trouble can start with a skin rash). SOOOOOO we have a plan...basically it is a process of elimination. Take care of the skin with moisture to help the sensitivities, stop the new med and switch it a different one, watch the rash carefully and if it gets worse start a steroid cream on the skin which could lead to a biopsy for confirmation of GVH, and last but not least is watch for other symptoms that might be signs of a cold or flu (the treatment of which is still unclear to me...do we manage at home or is it an automatic readmission to the hospital).
Dillon had been to the Bass Pro Shop before his transplant and he just loved it. It is like a museum. There are stuffed animals and exhibits and games and all sorts of fun things at this store. Yesterday afternoon he said he wanted to do something fun with Luca....so off to Bass Pro we went. Dillon gave Luca a tour of the store. They "rode" ATVs, they climbed in speed boats, they rode the clear elevator that goes through the middle of a fish pond, and the grand finale was the shooting gallery. Dillon was up and on his feet for about 1-1/2 hours in all....it was amazing and fun....and he was completely wiped out by the end. This morning his legs are sore from all that extra activity yesterday :)))
of all the years in my life this one is the one that I have the utmost thanks for everything in my life. My boy is healing, my family is intact and connected and supporting each other....and then there is all of you out there sending light and prayers and energy and angles and good wishes and all the powerful feelings that come with supporting us...so THANK YOU THANK YOU THANK YOU !!!! We truly feel the most blessed this year. We cannot say enough to all of you supporters. You have been an integral part in helping us get through this journey and we will be forever grateful to each and every one of you!!!
Thursday, November 22, 2012
Sean is back in Denver today. Our sweet little family gets a long weekend together.....sigh....we all need that so much for ourselves individually and as a cohesive unit.
Yesterday Dillon had a quick clinic appointment (which was not scheduled but they asked us to come in) because he developed a full body rash. The outcome of the visit was a list of reasons why the rash could be happening: It could just be sensitive skin. It could be GVH of the skin, which is concerning because he is already on treatment for the gut GVH and if it the skin is breakthrough then it could be a very strong case. It could be an allergy to a new med he started on the day he was discharged. It could be the beginning of a viral infection with a cold or flu being the most likely (apparently in some immunocompromised people the first sign of trouble can start with a skin rash). SOOOOOO we have a plan...basically it is a process of elimination. Take care of the skin with moisture to help the sensitivities, stop the new med and switch it a different one, watch the rash carefully and if it gets worse start a steroid cream on the skin which could lead to a biopsy for confirmation of GVH, and last but not least is watch for other symptoms that might be signs of a cold or flu (the treatment of which is still unclear to me...do we manage at home or is it an automatic readmission to the hospital).
Dillon had been to the Bass Pro Shop before his transplant and he just loved it. It is like a museum. There are stuffed animals and exhibits and games and all sorts of fun things at this store. Yesterday afternoon he said he wanted to do something fun with Luca....so off to Bass Pro we went. Dillon gave Luca a tour of the store. They "rode" ATVs, they climbed in speed boats, they rode the clear elevator that goes through the middle of a fish pond, and the grand finale was the shooting gallery. Dillon was up and on his feet for about 1-1/2 hours in all....it was amazing and fun....and he was completely wiped out by the end. This morning his legs are sore from all that extra activity yesterday :)))
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| Dillon shot a mountain lion, an owl, a rat, a raven, and turtle...plus a bunch of other stuff. |
Tuesday, November 20, 2012
62 continued....what a difference a day makes
Tuesday, November 20, 2012
Just about 24 hours ago my boy was riding in a wheelchair out of the hospital....
Today......breakfast with the family. He got up and said, "Whatever you guys are having for breakfast, I want some." It was so super funny because Dillon can be quite precise in what he likes for breakfast....not picky, just clear in what taste he is in the mood for. At this point his mind and body just cannot think for themselves about food, so he was willing to just take whatever was being served, which was eggs and banana bread and blackberries. He sat at the table, ate, smiled, talked, laughed, enjoyed.....
It blows my mind right now, having him behave so normally. I catch myself hovering, asking for the zillionth time if he is okay...he rolls his eyes and gives the old, "Yes mom. I am fine. STOP asking" with a shake of his head.
This will blow your minds....We went to the movies this morning at 11:40!!!!!! With disinfecting wipes, mask, and blanket to cover the seat....off we went. Dillon was super excited because we had seen the advertisement for the movie Hotel Transylvania for weeks while we were in the hospital. Apparently this is the last week of this movie in theaters before it goes to DVD, so we were really happy to get to see it on the big screen. They popped fresh popcorn for Dillon (he cannot eat things that have been sitting around for any period of time because bacteria can grow). There were 4 other people in the theater!!! Dillon had quite a bit of popcorn and half a box of Milk Duds. His stomach was fine by the end of it but his body was getting tired. It took his last bit of strength to get back to the car and then up to the apartment. The boys are both currently snoozing (I have been informed by my ever so wise kiddos that nap is for little kids but snooze is still an acceptable term for big kids). Nana went to the fabric store to check out the fabric selection in the big city, and me...I am writing this blog and then I will lie on the couch and read. Oh yeah...I took a really nice walk this morning in the cool autumn air....It was fantastic!!!!!
Just about 24 hours ago my boy was riding in a wheelchair out of the hospital....
Today......breakfast with the family. He got up and said, "Whatever you guys are having for breakfast, I want some." It was so super funny because Dillon can be quite precise in what he likes for breakfast....not picky, just clear in what taste he is in the mood for. At this point his mind and body just cannot think for themselves about food, so he was willing to just take whatever was being served, which was eggs and banana bread and blackberries. He sat at the table, ate, smiled, talked, laughed, enjoyed.....
It blows my mind right now, having him behave so normally. I catch myself hovering, asking for the zillionth time if he is okay...he rolls his eyes and gives the old, "Yes mom. I am fine. STOP asking" with a shake of his head.
This will blow your minds....We went to the movies this morning at 11:40!!!!!! With disinfecting wipes, mask, and blanket to cover the seat....off we went. Dillon was super excited because we had seen the advertisement for the movie Hotel Transylvania for weeks while we were in the hospital. Apparently this is the last week of this movie in theaters before it goes to DVD, so we were really happy to get to see it on the big screen. They popped fresh popcorn for Dillon (he cannot eat things that have been sitting around for any period of time because bacteria can grow). There were 4 other people in the theater!!! Dillon had quite a bit of popcorn and half a box of Milk Duds. His stomach was fine by the end of it but his body was getting tired. It took his last bit of strength to get back to the car and then up to the apartment. The boys are both currently snoozing (I have been informed by my ever so wise kiddos that nap is for little kids but snooze is still an acceptable term for big kids). Nana went to the fabric store to check out the fabric selection in the big city, and me...I am writing this blog and then I will lie on the couch and read. Oh yeah...I took a really nice walk this morning in the cool autumn air....It was fantastic!!!!!
Day 62.....lets try this again
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| Cruising to the apartment |
Tuesday, November 20, 2012
Wheewww....we made it.
Dillon was discharged yesterday afternoon at about 1:30 p.m. His brother pushed his wheelchair and I pulled the wagon of belongings. He was in high spirits and energetic. We got to the apartment and he declared that he would walk from the car to the apartment without the use of the wheelchair. He got out of the car and moseyed right along. Once in the apartment he walked around, put his jacket away, and settled onto the couch. After eating a little grapefruit and a few bites of pizza it was nap time for he and Luca. We had 2 very late nights in a row and they are both lacking several hours of sleep. Both boys slept for 2 hours while I went to the store to get groceries for our very naked fridge. No, they were not alone....my mom is here :)
The next big event of the day was......Brent's had their community Thanksgiving dinner last night. About 15 minutes before it started I asked Dillon if he wanted to come downstairs with us to get a little food. He said, "Sure, I want to do that." So off we all went. He walked down to the dinner, played ping pong with Luca for about 15 minutes, and then got a few bites of different foods on his plate. Everyone at Brent's was super excited to see him (they have not seen him in 2 months) and the extra attention was a bit overwhelming. Dillon ate some stuffing, turkey, and cranberries. Then, very discretely, he gave me the signal that he was "done". I swept him away without a big fuss back up to the apartment. Nana and Luca hung out downstairs a while longer and then joined Dillon and I in the living room from a little TV time on the couch.
Dillon was able to take all 14 of his meds last night. He did get a bit woozy but they stayed down. Off to bed at 9:30 with TPN running overnight.
Sean is still in Pagosa with this parents. He is trying to figure out if he can just come back up to Denver in a couple of days and have the weekend with us or if he needs to go back to Santa Fe to work. He is feeling much better and Dillon's doctors gave him the okay to return after 48 hours without symptoms or fever.
Luca is happy to be here. He misses us so much when he is in Santa Fe. He is relaxed and happy to be in the arms of his big brother and mama. He gave Dillon so many hugs when he first got here.....he is such a snugly lovey boy.
Nana will be here for the whole week or until Sean comes back.
Dillon does not have to return to the clinic until Monday so we have the whole week and weekend to ourselves. Our goal is to get outside and get some fresh air and move our bodies. Mr. Pickle is a much different kid than last time he was out of the hospital. He is engaged, he has energy, he has motivation and interest in things, he has a small appetite with minimal nausea and nonexistent vomiting, he has more strength and mobility....this is a whole new chapter for us....getting our Dillon back this time. We are all looking forward to some fun and relaxation.
Sunday, November 18, 2012
Day 60....if its isn't one thing it's another....
Sunday, November 18, 2012
This is NUTS!!!!!
Sean and Luca arrived at 2:30 yesterday afternoon. We all hung out for a couple of hours in the hospital room. Then Luca and I left to grab an early dinner so we would have plenty of time to relax and read together before bed. As we walked in the apartment door at about 6:30, Sean called saying he was not feeling very well....he was very tired, kinda dizzy, a little nauseous. I told him I would come switch places with him so he did not spread whatever he was dealing with to Dillon. Luca and I read for a few minutes and then I got a call from the head nurse on Dillon's unit...."we are taking Mr. Buckley to the ER...he is about to pass out, his extremities are tingling, and he is extremely nauseous!" My mind began racing..."what could this be, is it serious, is it being spread to Dillon as we speak, are either of them in danger...."
By the time Luca and I got to Dillon's room Sean was already in the ER and the cleaning crew was in the room doing an immediate deep sanitizing.
At 11 p.m. Sean was discharged from the ER after having received IV fluids and Zofran (an anti nausea med...same one Dillon takes every 8 hours). He did not have a fever so we figured it was from something he ate, combined with the extra stress he endured at work last week. He was feeling much better and drove himself to the apartment. The head nurse allowed Luca to sleep over at the hospital with Dillon and I, which is usually against policy. (Luca was so excited to finally get to stay in the hospital...one of his secret wishes early on in the journey was that he was 18 so he could stay with Dillon in the hospital).
This morning Sean woke feeling very feverish, weak, nauseated, exhausted. He has stayed at the apartment sleeping all day and the boys and I are in the hospital room. Our hope is to keep Sean's germs contained. At this moment, Sean has quite a fever of 101and is likely extremely contagious.
Parents/Grandparents to the rescue........Sean's folks are on their way to pick up Sean and take him to their home in Pagosa Springs (5 hours away) and take his car too..so that when he is better he can drive back home. His mom did not want him to be alone for days on end with the flu....someone needs to make sure he is staying hydrated and who better to do that than one's own mother! My mom is on her way from Santa Fe to help with Luca and Dillon and me :)))
The rule as I understand it is that anyone who is sick cannot be around a BMT patient for a week after an illness to assure that all contagious germs are gone. Sean will have to return to visit on a different weekend.
This is a huge disappointment for all of us.....but it is the necessary sort of isolation that has to happen in order to keep Dillon safe...and me as well. We are watching Luca very closely and if he begins to show any symptoms then someone will come and "evacuate" him as well.
Keep the prayers coming....we still have quite a storm to weather. Your love and energy are powerful forces in our lives every single day.....thank you!!!!!!!
This is NUTS!!!!!
Sean and Luca arrived at 2:30 yesterday afternoon. We all hung out for a couple of hours in the hospital room. Then Luca and I left to grab an early dinner so we would have plenty of time to relax and read together before bed. As we walked in the apartment door at about 6:30, Sean called saying he was not feeling very well....he was very tired, kinda dizzy, a little nauseous. I told him I would come switch places with him so he did not spread whatever he was dealing with to Dillon. Luca and I read for a few minutes and then I got a call from the head nurse on Dillon's unit...."we are taking Mr. Buckley to the ER...he is about to pass out, his extremities are tingling, and he is extremely nauseous!" My mind began racing..."what could this be, is it serious, is it being spread to Dillon as we speak, are either of them in danger...."
By the time Luca and I got to Dillon's room Sean was already in the ER and the cleaning crew was in the room doing an immediate deep sanitizing.
At 11 p.m. Sean was discharged from the ER after having received IV fluids and Zofran (an anti nausea med...same one Dillon takes every 8 hours). He did not have a fever so we figured it was from something he ate, combined with the extra stress he endured at work last week. He was feeling much better and drove himself to the apartment. The head nurse allowed Luca to sleep over at the hospital with Dillon and I, which is usually against policy. (Luca was so excited to finally get to stay in the hospital...one of his secret wishes early on in the journey was that he was 18 so he could stay with Dillon in the hospital).
This morning Sean woke feeling very feverish, weak, nauseated, exhausted. He has stayed at the apartment sleeping all day and the boys and I are in the hospital room. Our hope is to keep Sean's germs contained. At this moment, Sean has quite a fever of 101and is likely extremely contagious.
Parents/Grandparents to the rescue........Sean's folks are on their way to pick up Sean and take him to their home in Pagosa Springs (5 hours away) and take his car too..so that when he is better he can drive back home. His mom did not want him to be alone for days on end with the flu....someone needs to make sure he is staying hydrated and who better to do that than one's own mother! My mom is on her way from Santa Fe to help with Luca and Dillon and me :)))
The rule as I understand it is that anyone who is sick cannot be around a BMT patient for a week after an illness to assure that all contagious germs are gone. Sean will have to return to visit on a different weekend.
This is a huge disappointment for all of us.....but it is the necessary sort of isolation that has to happen in order to keep Dillon safe...and me as well. We are watching Luca very closely and if he begins to show any symptoms then someone will come and "evacuate" him as well.
Keep the prayers coming....we still have quite a storm to weather. Your love and energy are powerful forces in our lives every single day.....thank you!!!!!!!
Thursday, November 15, 2012
Day 57....let the eating begin!!!
Thursday, November 15, 2012
Yesterday Dillon ate twice (cream of wheat in the morning and half of a bagel in the evening, as well as 2 mugs of steamed caramel milk).
This morning upon waking Dillon asked me to order him another bagel. He ate the whole thing with a mug of steamed caramel milk and a bucket full of pills on the side. His stomach still acts "strange" when food first goes in....and he has to relax and focus on breathing in order to keep the food down, but if he can hang on for about 20 minutes then it settles and his belly gets busy with digesting, which is a task that his gut is having to "re-learn".
Dillon's energy is increasing. He is talking more, doing more for himself, interacting more, joking around with the nurses and doctors.
Sean's folks were here for 3 days and Big D enjoyed their visit. The extra time off and cleaning help was a great support. Thank you Pat and Marylin!!!!
My dad is going to head back home tomorrow morning (he has been here for 12 days, his longest stay). He was here for the increased nausea and vomiting, the readmission, the scope with biopsies, the diagnosis of GVH, and now the response to the treatment. Riding the waves, the ups the downs as a family, has been the biggest blessing for Dillon and I. Nana has been holding down the fort with Luca and Sean in Santa Fe, which keeps our family intact and functioning on that end. Thank you Mom and Dad!!!!!!
We continue to get good news this week. The rest of the biopsy results from Dillon's endoscopy are ALL NEGATIVE. The only thing they found in his entire GI tract is the mild GVH, which is responding beautifully to the steroids. The blood cultures, nasal wash, stool, and urine continue to be negative for EVERYTHING. His blood counts are beautiful and strong. He has not needed platelets and he only got red blood cells at the beginning of this current admission as a precautionary treatment. His liver functions and kidney functions are all within normal limits. Today his ANC is 4900. His bilirubin is back down to normal. Everything is just falling into place.
The plan, at this moment, is that Dillon will be discharged on Monday, November 19, and we will be back in the apartment. Sean and Luca are arriving Saturday afternoon, November 17, so Sean will get a couple of nights in the hospital with Dillon and then he will get to be here for the transition back "home". I have been trained to do Dillon's blood draws so we can do those at home and either Sean or I can just run them over to the clinic....so essentially we won't have to go into the clinic all of next week (unless some of the labs are abnormal, which no one expects to happen because he is so stable).
The last time we were discharged I was nervous and unsure. I wanted more than anything to get the heck out of the hospital but I was worried. There was so much to learn and handle, all the IV stuff and the fact that Dillon was still so weak that it was difficult for him to get to the bathroom. It was just pretty intimidating. This time....we are both ready and excited. I feel like I am getting my boy back this time!!!
Yesterday Dillon ate twice (cream of wheat in the morning and half of a bagel in the evening, as well as 2 mugs of steamed caramel milk).
This morning upon waking Dillon asked me to order him another bagel. He ate the whole thing with a mug of steamed caramel milk and a bucket full of pills on the side. His stomach still acts "strange" when food first goes in....and he has to relax and focus on breathing in order to keep the food down, but if he can hang on for about 20 minutes then it settles and his belly gets busy with digesting, which is a task that his gut is having to "re-learn".
Dillon's energy is increasing. He is talking more, doing more for himself, interacting more, joking around with the nurses and doctors.
Sean's folks were here for 3 days and Big D enjoyed their visit. The extra time off and cleaning help was a great support. Thank you Pat and Marylin!!!!
My dad is going to head back home tomorrow morning (he has been here for 12 days, his longest stay). He was here for the increased nausea and vomiting, the readmission, the scope with biopsies, the diagnosis of GVH, and now the response to the treatment. Riding the waves, the ups the downs as a family, has been the biggest blessing for Dillon and I. Nana has been holding down the fort with Luca and Sean in Santa Fe, which keeps our family intact and functioning on that end. Thank you Mom and Dad!!!!!!
We continue to get good news this week. The rest of the biopsy results from Dillon's endoscopy are ALL NEGATIVE. The only thing they found in his entire GI tract is the mild GVH, which is responding beautifully to the steroids. The blood cultures, nasal wash, stool, and urine continue to be negative for EVERYTHING. His blood counts are beautiful and strong. He has not needed platelets and he only got red blood cells at the beginning of this current admission as a precautionary treatment. His liver functions and kidney functions are all within normal limits. Today his ANC is 4900. His bilirubin is back down to normal. Everything is just falling into place.
The plan, at this moment, is that Dillon will be discharged on Monday, November 19, and we will be back in the apartment. Sean and Luca are arriving Saturday afternoon, November 17, so Sean will get a couple of nights in the hospital with Dillon and then he will get to be here for the transition back "home". I have been trained to do Dillon's blood draws so we can do those at home and either Sean or I can just run them over to the clinic....so essentially we won't have to go into the clinic all of next week (unless some of the labs are abnormal, which no one expects to happen because he is so stable).
The last time we were discharged I was nervous and unsure. I wanted more than anything to get the heck out of the hospital but I was worried. There was so much to learn and handle, all the IV stuff and the fact that Dillon was still so weak that it was difficult for him to get to the bathroom. It was just pretty intimidating. This time....we are both ready and excited. I feel like I am getting my boy back this time!!!
Monday, November 12, 2012
Day 54....
Monday, November 12, 2012
I just realized that on the last post I was in my usual time warp...it was a snowy Saturday not Sunday.
Dillon is getting better each day. His nausea is at a more controlled level....certainly not gone but it is not consuming his full attention and energy every moment of the day. He did eat a few bites of watermelon yesterday, which he vomited about an hour later and then 2 more times after that....I guess the old belly decided it wanted to be VERY empty yet again. He tries so hard to meet the expectations of eating and often it is stressful for him. This is yet another Catch 22 situation. He gets angry with me when I ask him throughout the day if he wants something to eat. I have a small arsenal of his favorite foods to draw on at any moment.....to no avail. I conveyed the story to him about his birth and how from the very first breath he took my main job in this world was to feed him. He listened, rolled his eyes, declared that he does his best. "Yes my strong one....you do your very best, better than anyone would ever expect.....but as your mommy I just cannot stop trying to feed you." I wonder if I should just stop trying, or asking, so that his perception of pressure from me is removed and thus his stress level around the food issue reduced. Surely a growing adolescent boy will eventually regain the intense desire to eat....constantly....right????
We had another fantastic night of sleep last night.
The doctors think that the steroids are beginning to work on the gut GVH. He began the one that he has to take by mouth today. Of course.....the side effects.....Good Lord do we always have to trade one solution for another outcropping of symptoms? This time it is VERY high blood pressure. High enough that they are having to treat it. So they take his blood pressure about a million times every day and when he has 3 highs in a row then in comes.....you guessed it.....ANOTHER MED. This is a strong antihypertensive that he puts under his tongue, tastes bad enough to induce immediate vomiting, and works on the blood pressure in just minutes. Holy moly does this cycle ever cease?
Sean's folks are arriving today for their first visit and Dillon is looking forward to that. The depth of this boy's support network continues to grow.
I just realized that on the last post I was in my usual time warp...it was a snowy Saturday not Sunday.
Dillon is getting better each day. His nausea is at a more controlled level....certainly not gone but it is not consuming his full attention and energy every moment of the day. He did eat a few bites of watermelon yesterday, which he vomited about an hour later and then 2 more times after that....I guess the old belly decided it wanted to be VERY empty yet again. He tries so hard to meet the expectations of eating and often it is stressful for him. This is yet another Catch 22 situation. He gets angry with me when I ask him throughout the day if he wants something to eat. I have a small arsenal of his favorite foods to draw on at any moment.....to no avail. I conveyed the story to him about his birth and how from the very first breath he took my main job in this world was to feed him. He listened, rolled his eyes, declared that he does his best. "Yes my strong one....you do your very best, better than anyone would ever expect.....but as your mommy I just cannot stop trying to feed you." I wonder if I should just stop trying, or asking, so that his perception of pressure from me is removed and thus his stress level around the food issue reduced. Surely a growing adolescent boy will eventually regain the intense desire to eat....constantly....right????
We had another fantastic night of sleep last night.
The doctors think that the steroids are beginning to work on the gut GVH. He began the one that he has to take by mouth today. Of course.....the side effects.....Good Lord do we always have to trade one solution for another outcropping of symptoms? This time it is VERY high blood pressure. High enough that they are having to treat it. So they take his blood pressure about a million times every day and when he has 3 highs in a row then in comes.....you guessed it.....ANOTHER MED. This is a strong antihypertensive that he puts under his tongue, tastes bad enough to induce immediate vomiting, and works on the blood pressure in just minutes. Holy moly does this cycle ever cease?
Sean's folks are arriving today for their first visit and Dillon is looking forward to that. The depth of this boy's support network continues to grow.
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