History

Wednesday, December 12, 2007 12:27 AM CST

It's Christmas!! I know it's coming soon because the tree is up. I helped Mommy put the ornaments on the tree and I like it at night when Mommy makes the house all dark and then turns the lights on the tree... it's so pretty! I think Baby Dottie likes it too. I really like my baby sister now. She's so cute, and she's always laughing at me... I think she must like me too.
School is still a lot of fun, I'm learning a lot and I get to be with my friends all day. I like riding the bus with my friends too!
I have a new friend who is helping me learn to eat. She is really happy and silly and she gives me stickers for tasting things. She's helped me learn how to bite and chew.... I'm not even afraid to swallow any more! My favorite thing to eat is peanut butter. I always have a bowl of it when I get home from school. Mommy puts it in a bowl and I eat it all up with a spoon! Chewing is taking a lot of practice, but there are some cookies and crackers that I can chew really good. I'm excited about all the foods I can eat now!!
Another thing I learned how to do is use the potty... I don't have to wear diapers anymore!! It's so much better now that Mommy doesn't have to help me, I can do it all by myself! Everybody tells me that I'm a big boy now that I'm not wearing a diaper any more...
I wonder what I'm going to get for Christmas this year.... Mommy tells me that Santa is going to bring the presents but I saw a bunch of toys in her closet...

Merry Christmas!!!

Thursday, August 9, 2007 8:14 AM CDT

Wow!! This Summer has been so busy!!

You know how much I love my school... well they even have school in the summer!! And you know what?? I am taking the BUS to school now! My friend Debbie who works at school comes to my house every morning and rides the bus with me. She is there in case I get sick or need help. School is a little different in the summer, we play outside mostly and get to swim in little pools.

I haven't been able to swim for a couple weeks because I hurt my foot and I have a hard cast on it that can't get wet. I can walk around fine and it doesn't even hurt anymore. I hope I get the cast off soon so I can go swimming, I really miss it.

I got new yayas the other day. They're orange and blue this time. My yayas were broken so I didn't have them for a whole week. Mommy got to practice her signing a lot when my yayas were broken because I can't hear her without them.

Baby Dottie is getting big so fast. She's really cute now, I like to play with her and make her laugh. She always smiles and laughs at me. Mommy tells me how much Baby Dottie loves me because I'm the Big Brother. She tells me that someday we'll be best friends... I don't know about that....

Tuesday, April 3, 2007 10:31 AM CDT

Everyone keeps telling me "You're 4 now", I think it has something to do with my birthday, I still tell people I'm Graham. I had two parties for my birthday. At school we had cake and my friends gave me cards and some cool farm animal toys. Then the other day my friends Tori and Sam came over to play. We had more cake, but this time the cake was made out of ice cream, I didn't eat any. My Nana and Peepa came over too. It was really warm so we got to play outside. We went up in the tree fort and threw sticks for Olive to chase. That's us in the picture up there. Tori and Sam are my favorite to play with because they are nice to me, and they know how to sign too because we go to the same school.

In case you don't know yet, there's a baby in my house now. She's been around a while and I don't think she's going to leave. Her name is Dorothy. I don't know why my Mom and Dad named her after a Dinosaur, maybe they're friends with the Wiggles. She's really small and she cries sometimes and Mom says she's hungry, since she doesn't have a tube like me she has to eat with her mouth.
I guess she's cute but sometimes I want Mom to put her away so we can play.

I still love going to school, I'm there all day so when I come home I'm pretty tired. I have a lot of fun with my friends at school and I like my teachers too. I'm learning all about my ABCs, numbers, animals...everything!
Everybody at school signs and I have a special teacher who helps me talk better. Even though don't like to eat, I get a breakfast and lunch tray like the other kids. Sometimes I take a little taste, especially if it's ketchup, that's my favorite.

I used to like to watch TV, I had some DVDs and videos that I like to play with. Mom and Dad would sometimes tell me 'All done TV' and I'd get mad and cry. When I got home from school the other day the TV was GONE!! Mom says it's broken, so if you know how to fix a TV please let my Mom or Dad know...Thanks!!!

Tuesday, February 13, 2007 10:31 AM CST

I'm pretty busy for a preschooler you know. I go to school Every Day now and it's so much fun!! I have a bunch of friends that all know how to sign... some of them talk and some don't. There is a very special girl at school who I like A LOT.... she gives me a hug every morning, sits with me at breakfast and lunch and helps me all day. I talk to Mama about her a lot. I like to bring her things from home to show her.
I'm really good at my ABC's now, I'm learning to read the names of people that I know, and I try to fingerspell words from my books a lot. I still love to color and paint, and dance to music.
Mama used to dance with me a lot but she doesn't do it much anymore. She tells me there is a baby coming and I have noticed that her belly is REALLY BIG.... she had a hard time getting up off the chair yesterday... I asked her if she was hurt. Mama and Dada talk about a baby coming soon, there is a room upstairs with a bunch of new stuff in it. My old bed is in there, and there is a little swing, and a couple little chairs, and lots of little pink hats and shirts and things. They really seem to be making a big deal over this baby that's coming... I wonder how long it's staying.... my cousin Nate is a baby, he comes over sometimes but only stays for a little while....
I'll let you know what happens...I'm pretty curious...

Tuesday, July 25, 2006 9:23 AM CDT

Wow!! Mama's been busy so I guess it's up to me to update this page now.

I started preschool in April and really like it. I have lots of friends there and the teachers are all really nice. I sit with the other kids while they eat breakfast and then I have to go to the nurse to get some food in my tube. I still don't like to eat, sometimes I lick things but if I get a chunk of anything in my mouth it makes me gag, it's a little scary. Someday I'll be able to eat like the other kids.
I like how everybody knows how to sign at school. I learn more and more every day, I bet I'll know more than Mama and Dada pretty soon. I go to speech therapy at school too, I get to go with my friend Tori and we read stories and play games.
I love playing on the playground at school. When I first started going there I couldn't climb the stairs and was afraid to go down the slide. But now I can do most of the stuff the other kids do, I even like going on the swing!!!

We moved to a new house a couple months ago. It's a lot bigger and I have to go up the stairs to get to my bedroom. It didn't take me long to learn how to go up and down the stairs by myself, I don't need any help from Mama or Dada anymore.... except when I'm tired, then I get someone to carry me.
I got a new bed too!! Mama and Dada call it a 'Big Boy Bed'. I got to help Dada take apart the old bed and put together the new one, it was fun!! I love the new bed because I can get in and out all by myself. It's great because if I get up REALLY early I can just hop out and go wake Mama and Dada up..... or if don't get them up I can just go downstairs and do whatever I want.

I haven't been to a lot of doctors lately. Just the lady who plays games with me to see how much I can hear. I don't think I was hearing very good for a while even with my YaYa's (hearing aids in case you don't know). So we went to this other lady who fixed my YaYa's and now I hear much better!! I keep telling Mama all the new things I can hear. I still get mad sometimes and throw my YaYa's... it makes Mama mad and I have to say I'm sorry and that I won't throw them again...but I always do....I can't help myself, she just puts them right back in...

For some reason Mama keeps pointing to her belly and asking me "What's in there"??? Of course I have no idea what she's talking about and she tells me, "Baby". Then she tells me something about a brother or a sister.... I don't have a clue what she's talking about... she and Dada are pretty happy about it whatever it is....

Thursday, April 6, 2006 3:42 AM CDT

Wow!! I can't believe he's 3!! My baby has turned into a little kid somehow. Graham had a very busy birthday weekend. It started with a party at school on Friday. It was his last day in the Early Intervention play group... (now that he's 3 he goes to the preschool, more on that later). He wasn't sure he liked everyone singing/signing 'Happy Birthday' to him so when they were done he took out his hearing aids and threw them right at the girl across from him!! They got him a very nice present, a table top easel which he loves...
Friday night we went out for pizza with family...we got a surprise visit from Graham's Mema and Peepa who had been in Florida for the winter. Graham was so excited to see his Mema!!
Sunday was Graham's Gymboree party. His friend Tori from school is also turning 3 soon so it was a joint party. It was lots of fun but by the end of the day he'd had enough and was yelling at me...'All done Birthday!!!'

Graham's official first day of preschool was yesterday. He's going to a school for Deaf/HOH kids in Middleboro. He's starting out 3 days a week 9am til noon... the goal is to have him going 5 days, 9am til 3pm. That might take a while. He cried when I left him there but they told me it was only for 10 seconds, then he relaxed. There are 8 kids in the class with a teacher and 2 aides. A lot of the staff is Deaf and class is taught mostly in sign. Part of the day is 'spoken language' and he'll get lots of speech therapy. We couldn't be happier with the program, it's the perfect place for Graham.

And the last piece of news.... We bought a house!! We fell in love with it as soon as we saw it, made an offer and we close in 3 weeks!!! It's a 4 bedroom Gambrel with a fenced in yard and a big swingset/tree fort for Graham. We are so excited about it!!!

I'm putting lots of new photos in the photo album (link at the bottom of this page) so check it out!!!

Friday, December 2, 2005 7:01 AM CST

Well the terrible twos have reared their cranky, fit throwing head lately. Graham has grown accustomed to the 'time out', and after a tantrum will expect to get tossed in his crib till he calms down.... he'll do something naughty and then tell Mama or Dada... "nite nite"!! He still yanks his hearing aids out when he's mad like he's always done, except that now when he throws them he goes for distance. I've spent hours looking for them, so far we've always been able to find them. As soon as he's calmed down he'll ask for them back..."want yaya??"

Feeding therapy has been going well. He'll accept food on a spoon from his therapist; he gets a reward for each bite... a sticker or stamp usually work. This method DOES NOT work at home. This is common for these kids to eat better for the therapist than for Mom and Dad at home. At home he'll lick just about anything, dip things in ketchup, bbq sauce, gravy etc.... He'll even feed himself with a spoon when the mood strikes him. He's not eating enough to count towards his daily calorie needs so he's still 100ube fed. He's had no episodes of retching, and is off the feeding pump completely. We just give him 5 quick bolus feeds a day.

His hearing loss is stable, there hasn't been a change since last October. His loss is in the moderate/severe to severe range. His audiologist at Children's told us that CDH/ECMO kids are at very high risk for Profound Deafness. We've always known that... but it's still good that he hasn't lost any more over the last year. He still goes to READS, school for the Deaf and Hard of Hearing in MIddleboro. He gets speech therapy once a week and goes to playgroup once a week. The staff there is mostly Deaf and the classes are all signed. It's so neat to see Graham hanging out with other kids who sign. He'll go to preschool there full time when he turns 3 as long as Plymouth approves the placement.... we might have to put up a little fight for it but we're not too worried about it. Next week he goes to the Boston Center for Deaf and Hard of Hearing Children (BCDC) for a Speech and Language Eval. They will likely recommend he continue at READS as he won't get much, (if any )sign at the public school.

We had been discharged from physical therapy over the summer and I took him back this fall because he wasn't making any progress in gross motor skills. He doesn't run, jump, climb, go up or down stairs.... he won't even try these things. PT didn't work at all; in four weeks all he did was throw himself on the floor and scream. We couldn't get him to do anything; even things that he is physically capable of doing he'd refuse. So instead of PT, Graham goes to Gymboree at least once a week. We hope that being around other kids his age doing all the normal toddler things will inspire Graham to try new things. He has a lot of fear of anything new, a slide or swing will pretty much freak him out. He's pretty weak still, and he knows how much effort it's going to take him, so he just refuses to try. I've gotten him to go down a small slide, holding on to me for dear life of course. He watches other kids curiously on the climbing equipment, but won't go near it himself. He'll get there in his own time.

Sunday, August 21, 2005 2:14 PM CDT

Graham got a pretty bad stomach bug last week and spent Wednesday night at Children's. He got some IV fluids and was back to his old self in no time.
We took him to the Marshfield Fair on Saturday. He went on the Merry Go Round, I wish the pictures came out because he screamed his head off the entire time. He was absolutely terrified, I felt so bad! Good thing he recovers quickly, as soon as it stopped he was fine. Poor kid... he had an eventful week.
Some new pictures in both photo albums

Saturday, July 16, 2005 9:45 AM CDT

Dennis' company cookout was yesterday in Falmouth. The clown in the picture is Benjamin, he used to be part of the Moscow Circus. He was Fantastic!! Graham spent most of the day just mesmerized by him, he got to be part of the show and everything!! It was a fun day... check out the pics!!

Wednesday, June 15, 2005 10:44 AM CDT

Hey everyone! We haven't updated in a while. Everything has been going just fine. Graham has been healthy since his surgery in Feb. He's had some minor issues with tolerating his feedings (tried milk based formula which went horribly, now back to the soy), but we're used to that. He still refuses to eat ANYTHING, despite the efforts of his very patient feeding therapise Miki. We plod along... he'll eat eventually. He goes to playgroup at what will be his school when he gets older. It's a program for Deaf and Hard of Hearing kids. They use Total Communication which means speaking AND signing (ASL), we just love everyone there, it's a great program.
At the bottom of this page, under LINKS, is Graham's new photo album. There will be frequent updates to it, as it is very user friendly (and FREE)... so check it out. Click on the link , click on the album, then click on slideshow.

Wednesday, March 30, 2005 12:27 AM CST

HAPPY BIRTHDAY TO ME!!! On March 31st I will be 2 whole years old! I had a party the other day, lots of people came over and brought me presents. I got the coolest summer clothes, hats and sandals, some neat toys. I really like the books I got; one with Elmo and one with magnets!! I also got a big truck with all sorts of blocks in it. And you know what else?? SPOONS!! Someone actually remembered how much I like spoons and got me my very own that Mama and Dada will never put away where I can't reach them! How cool is that!! Thank you everyone for all the great stuff, Birthdays are pretty cool, I hope I have another one real soon!!

Saturday, March 19, 2005 9:55 AM CST

Graham has a new web page! Just in time for his 2nd birthday!! He's a very busy kid so check back often for updates and new pictures. His whole story (from the old website) is in the Journal History, for those who aren't familiar with him. This site only allows three pictures so there is a link at the bottom of the page that goes to more pictures.

Friday, March 18, 2005 6:07 PM CST

February 25, 2005 at 07:44 PM EST
Hey everyone, some folks don't know yet that Graham had surgery last Friday. We took him in to Children's on Valentine's Day because he was not tolerating anything in his stomach, and was going to get dehydrated. What he had fixed was a large hiatal hernia, his fundoplication had come undone and almost half of his stomach had slipped up into his chest (you can look up the medical terms on the Children's site or WEB MD, I'm not going into details). His surgery was a complete success, he's better than before, tolerating is tube feeds just fine and already wanting to EAT. In true Graham fashion he bounced right back and now only a week post op, he's home (got out yesterday morning)and acting like his old self. The pictures of him in the hospital were taken on Tuesday, four days post op. The other pictures were taken around Christmastime...

November 02, 2004 at 11:25 AM EST
Hey Everyone! I guess the Care Page is still active, so I thought I'd put some pictures up and give a little update. For those who don't know yet, Graham has lost much of his hearing due to antibiotics he was given in his first few weeks of life. The medicines were necessary to save his life and it was a side effect we were prepared for. We've all been learning to sign, it's lots of fun, and Graham has picked it up so quickly! He's been fitted for hearing aids... he'll have them in a couple weeks. He started eating in August.... some days he'll put away a whole jar of food!! He'll still be tube fed until he's able (and willing) to eat enough consistently, could be 6 months, a year, 2 years, it's up to Graham. He's still going to physical therapy, and going at his own pace, which seems to be slow...not crawling or walking yet... he's discovered and mastered the 'scoot' and it gets him where he needs to go for now. He'll walk when he's good and ready, he's in no hurry and neither are Mama & Dada. His health is generally excellent, however, a surgery he had to correct his reflux has come undone, and much of his stomach has slipped up into his chest.
This poses no real threat to Graham, and will eventually need to be fixed. His surgeon wants to wait until he is eating better as a major surgery right now will probably make him stop eating and we'll have to start from scratch. So this winter we have to be extra extra careful about keeping him healthy.... a stomach bug will mean surgery. We'll have to lay low once again for the Holidays, doctors orders to steer clear of big groups of people. There is no problem with a few people at a time coming to see us though... we don't mean to be anitsocial.... just need to be super careful!! So stay healthy, give us a call and come see us!!

April 02, 2004 at 11:24 AM EST
This will be the final Graham update (the CarePage is only good for a year). What an amazing ride!! It's so hard to believe Graham went through all that he did, he's such a little trooper! He'll still face some challenges, but making it through this first winter with so few problems is just another miracle. Thanks to everyone that's been there for us, there are way too many to name, you know who you are.

Take Care Everyone,

Love,

Cristin, Dennis and Graham

January 22, 2004 at 03:24 PM EST
New Pictures!!

October 30, 2003 at 01:55 PM EST
Hey everybody!! It's been a while since I've updated and Graham has been doing so much!! Graham began 'eating' food in Sept. Not so much eating as gagging, spitting and yelling at momma but we keep trying!! He goes to physical therapy twice a week where he gets to play on all sorts of fun stuff that's gonna make him strong enough to do things like sit up and crawl. All his checkups with all his specialists in Boston have gone fine, he'll be up there once a month or so for follow ups. He's gotten a couple colds and a stomach bug but battled back each time without even a trip to the doctor! On Oct 21 we celebrated Graham being out of the hospital longer than he was in the hospital.. YAY!!!! He'll be 7 months old on the 31st and is weighing in at 20.1 lbs and 29 1/2 inches. Check out new pics!!

September 09, 2003 at 10:29 AM EDT
Pictures!! It finally worked!!
Graham has been home almost two months and has had absolutely NO problems. Have had several checkups with the team in Boston and he continues to amaze his doctors with how well he's done. He's doing all the normal baby things.... except eating... we should be able to try baby food in a month or so. He still has trouble swallowing but we let him taste things all the time.... he loves to lick grapes, strawberries, and even olives!
Will try more pictures soon...

August 21, 2003 at 09:52 AM EDT
Graham is doing Excellent!! Been home over a month, gained 3 pounds and learning lots of cute baby tricks!!! All of his visits with all of his doctors have gone great! We're all moved into our house in Manomet and Graham finally has his own room! Sorry there haven't been any pictures, I've tried and tried but the web site won't accept any. I'll keep trying!!

July 22, 2003 at 01:40 PM EDT
Sorry there hasn't been an update in a while!! Graham was discharged from Children's Hospital on July 11. His stay was 101 days. He's been doing Great since he's been home, no problems at all. He's such a good baby, quite mellow, never cries unless he's sleepy, and sleeps through the night(sleeps a whole lot actually). He'll be followed very closely at Children's by several specialists so we'll be making the trek to Boston at least once a month. Will have lots of pictures soon!!!!

July 08, 2003 at 11:53 AM EDT
It's going to be a VERY busy week. Graham has done so well since his surgery, has had no complications whatsoever, is up to full feeds through his new G tube, and is doing better than anyone expected. SO..... Someone from each specialty will come and peek at him one last time, a few more tests to get out of the way, and then.....(lots of knocking on wood here everyone)...WE'RE OUTTA HERE THIS FRIDAY!!!**

THANK YOU THANK YOU THANK YOU!!!! To EVERYONE who has gone through this with us. Your words of love and support have really made us realize what WONDERFUL Family and Friends we have. WE LOVE YOU ALL!!!!

**(Of course we are prepared for the unexpected delay but the goal is Friday.)

July 01, 2003 at 12:58 PM EDT
We're on the move again. Graham has made such a speedy recovery from his surgery that he's ready to go back to the floor today. He didn't need to go on a vent at all and isn't even on oxygen. He's being kept comfy with some good drugs and is alert, moving around and looking at his toys. We're in the home stretch now!!!
June 30, 2003 at 02:26 PM EDT

Graham had his surgery this morning and everything went excellent. His surgeon had booked the OR for the whole day and was all finished in less than 4 hours. Graham now has a Mick Key (Mickey) Button... a plastic piece that is flush against his skin that a tube attaches to for feedings directly into his stomach. He had a procedure which should fix his reflux. And he also had his left kidney removed; it had been badly damaged during Graham's first few days and wasn't working much at all. He will spend the next day or so (or maybe longer) in the ICU. The number there is 1-800-666-5490. New pictures of Graham and friends.

June 23, 2003 at 05:12 PM EDT
Making Plans!!! June 30 Graham will have surgery to place a G tube (feeding tube) and a procedure to fix the reflux problem. He's gaining plenty of weight and has been doing all the things his doctors want him to do. They estimate another two weeks after surgery for discharge. He loves stroller rides and hanging out in his swing but he's definitely ready to be out of the hospital...
Lots of new pictures!!

June 11, 2003 at 11:55 AM EDT
Getting used to life on 8 West... Much different than the ICU!! Days are busier, doctors and nurses and therapists in and out all the time. Tried to take some milk from a bottle and it didn't agree with him so we're going to have a swallow study done to see if he is aspirating fluid into his lungs. He is gaining weight slowly....up to 11 pounds now. He'll get his g-tube once he's gained enough.... no estimated discharge date yet but his doctor told us that two weeks after the g-tube placement he should be able to go home barring any complications.........Some new pictures!!

May 29, 2003 at 02:57 PM EDT
Graham has Graduated!!!! After 59 days in the ICU he's been transferred to the infant/toddler post surgical floor. For those who visit we can be found on 8 West room 805. The phone # in the room is 617-355-3809.... sorry no toll free # this time. We have not been told, nor do we dare to ask, how much longer our hospital stay will be but we're guessing another month. Now that his lung issues are mostly stable he has to learn how to eat so he can gain some much needed weight (he's kinda skinny). He will likely have minor surgery for G-tube placement as most CDH babies don't like to eat enough to meet their high calorie needs. That's all for now!!

May 23, 2003 at 11:12 AM EDT
So far so good! He's 'sprinting' more every day. Today he'll be off of CPAP twice for five hours each time, increasing the time off CPAP by an hour every day. While he's sprinting he needs very little oxygen and is not struggling to breathe at all. Now that he's more alert, he's figured out how to wiggle out of the CPAP thing that's strapped around his face..... I told his surgeon that he's getting out of the CPAP and the doctor said.... "Good Man". Lots of new pictures!!

May 19, 2003 at 09:40 AM EDT
Graham has tolerated being off the vent just fine so far. Today they're "sprinting" him which means taking him off CPAP and giving him a little oxygen for a couple hours at a time to practice doing all the work himself. They'll do longer and longer 'sprints' until he's off CPAP all together. He gets to leave the ICU and go to a regular floor when he's off CPAP and stable for a couple days. He's being weaned off his sedation and is awake more every day... even sitting up in a special chair for an hour a day as part of his physical therapy. He's pretty laid back about everything and fusses only a little.... he tries to cry but can't make noise yet....

May 14, 2003 at 09:51 AM EDT
Graham was taken off the vent last night and for the first time is breathing on his own without a tube down his throat. He's getting a little pressure support with nasal CPAP but his doctors say he could be off that within a couple days. He hasn't cried or made any noise yet, probably because his throat is quite sore and he's still pretty sedated. Physical therapy has started working with him getting all his limbs moving and giving him chest PT to loosen up secretions in his lungs... he loved the chest PT and actually fell asleep while the therapist was patting his chest. The dietician will be coming around soon and we'll start to introduce things into his mouth... will start with a preemie pacifier and work our way up. Hope to have some new pictures soon.

May 12, 2003 at 04:40 PM EDT
Graham is making progress every day, tolerating being weaned off the vent. He's breathing on his own with just a little pressure support from the vent. He could come off the vent in the next couple days. He graduated to a big boy bed today and can actually wear clothes now!! And last but not least...... Mom and Dad got to hold him for the first time this weekend!! Hope to have some new pics soon.

May 09, 2003 at 12:30 PM EDT
Graham was put on the conventional vent this morning. So far everything has looked fine. The plan is to lower his settings once a day at first... then twice a day if he's tolerating things. No idea when he'll come off the vent all together. He's losing all his extra fluid and looks much better. He's over the stomach bug and on full feeds of fortified breast milk. His doctors are pleased with how well he's done this week.

May 05, 2003 at 12:48 PM EDT
Still has the stomach bug, no seizure activity since friday. He's peeing plenty, the doctors aren't worried about his kidney function and won't need dialysis. He's still very swollen looking from the extra fluid in his tissues, they say it will take a few days to get rid of it. No plans to switch his vent until he's over the bug and his fluid retention is resolved.

May 02, 2003 at 05:09 PM EDT
Graham's kidney function seems to be improving. The doctors think that his kidney trouble is from an intestinal bug that he's got and that once he's over the bug things should improve. They are not planning on putting him on dialysis at this time. He is peeing more and more and his lab values are good. He's still on the oscillating vent and respiratory wise he's doing fine. He had some mild siezure activity today which is new, but according to neurology is quite common in babies that are this sick and they don't think that it's anything serious. He will have an MRI once he's more stable. He's been put on meds to control the siezures.

May 01, 2003 at 01:13 PM EDT
Graham was taken off ECMO this morning. His lung function seems to be ok so far. Still on the oscillating vent. Last night his kidneys showed signs of failure (he stopped peeing and his blood pressure went way up).... a kidney ultrasound showed a healthy looking right kidney and a questionable left kidney... right now the doctors are discussing putting him on dialysis. They can't give an answer as to why his kidneys would fail. Hope to have more to tell by tomorrow.....

April 25, 2003 at 10:43 AM EDT
Graham has had a stable week. He continues on ECMO with no complications. Daily chest x-rays show no further air in his chest. His last chest tube was removed yesterday. The plan is for Monday to get another CT scan of his lungs and possibly try a 'cycle' off of ECMO which means they'll clamp off the ECMO circuit and see how Graham does on his 'own'... will still be on the vent. So until Monday he's just going to continue to heal and rest up for his big day....

April 18, 2003 at 11:14 AM EDT
Graham's been keeping his team of doctors on their toes. The air leak in his lung was not getting any better so yesterday morning he was put back on ECMO to give his lung a chance to rest and heal. The procedure to put him on ECMO is considered surgery... once he was successfully put on the ECMO machine Dr. Jennings opened up his chest and looked at the right lung (the lung with the leaks)....he told us that the lung looked better than he thought it was going to look and that he was able to patch up the leaks. It was surprising to a lot of people that they did his surgery right on his bed in the ICU but they didn't want to take the chance and move him. Once he was stable they did take him to get a CT scan of his head and lungs. Dr Jennings said once again that the inside of his lungs wasn't as bad as he thought they would be and his brain looked fine. There is a lot of damage but also plenty of good lung tissue. The plan is to keep him on ECMO for 1 or two weeks.. he'll get another CT scan in a week to see how he's healing. There haven't been any air leaks since his surgery yesterday. If all goes well there shouldn't be anything to report until the next CT scan. As long as he's on ECMO and tolerating it well, no news is good news.

April 16, 2003 at 09:29 AM EDT
It's been a rough couple of days. They have not resolved the air leak problem. He hasn't had the CT scan yet because he is too unstable to tolerate being moved. They have changed his chest tubes and air is coming out of the tubes but air does still remain in his chest. He's been awake on and off but still sedated. He hasn't been tolerating any kind of stimulation lately so today they are not planning on doing anything but letting him rest. If anyone is planning to visit it would be wise to call first, anyone can leave a message at the bedside....... call 1 800 666 5490 and ask to leave a message at Graham's bedside.

April 14, 2003 at 10:52 AM EDT
Graham had a busy weekend. They let him wake up on Saturday....has been opening his eyes, moving around a little.... had his first poop since his surgery. He got a second chest tube yesterday because he had some air accumulating in his chest.... He's having a lung CT scan today to see what the problem is. He's still on the oscillating vent at very low settings... when the air leak problem is solved he should be able to go on the conventional vent.

April 11, 2003 at 10:07 AM EDT
Graham continues to improve ever so slowly. He got his NJ tube yesterday. They'll start giving him breast milk today. They've backed off on his sedation so he should start to wake up today. He's still on the oscillating ventilator but he is tolerating being weaned now.... (he wasn't tolerating it last weekend). That's all that's new for now. Thanks to everyone for your words of encouragement!!! Thanks Dad for the pictures!!!!

April 09, 2003 at 09:53 AM EDT
No changes to report. At this point no news is good news. He's teaching his parents patience (they're really getting the crash course in patience....) He'll stay on the oscillating vent for a couple more days to give his lungs a good rest and time to heal.
Thanks everyone for all your prayers and support!!!!!

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