I forgot because today we were doing this:
And this:
And a little of this:
And of course a lot of this:
Hooray for new memories.
Saturday, December 24, 2011
I actually forgot
There were times today that I forgot what today is. I was so wrapped up in what today should always be...Christmas Eve. And I forgot that it is also Tiernan's 2nd "Heartiversary". I forgot numerous times that 2 years ago we were doing this:
I forgot because today we were doing this:
And this:
And a little of this:
And of course a lot of this:
Hooray for new memories.
I forgot because today we were doing this:
And this:
And a little of this:
And of course a lot of this:
Hooray for new memories.
Friday, December 23, 2011
Healthy Boy from Teeth to Tummy
One of the many reasons I am thankful for other heart moms in my area are the recommendations we receive for various health related things. Like dentists. With Tristan we didn't really give much more thought to which dentist he would see except for whether or not our insurance is accepted or the office is convenient. But then a fellow heart mom found things to be slightly more complex, as they usuallly are given the cardiac history. When her son had to have several cavities dealt with Dr. S was not comfortable with just any dentist performing the proceedures, and he certainly was not willing to consent to them being done in office. Poor Jesse had to visit 3 different pediatric dentists with her son and sift through many different opinions until she at last came to Dr. Beck at Fircrest Children's Dentistry. I am so glad she did. We finally took both boys in for long overdue checkups and cleanings. Tristan did great! He loved the entire atmosphere...a well stocked playroom/waiting area and a big bright procedure room with TV's in the ceiling and personalized drool bibs. Lots of fun stuff. The short story on him is he has one little cavity and a very crowded mouth with a cross bite from his thumb sucking history. (and genetics...sounds like my mouth.) Orthodontia is assuredly in our future.
Tiernan did a fabulous job. I just can't believe he ever had an oral aversion! He let Dr. B brush on the flouride treatment and check out his chompers without a single complaint!
I was concerned that he would have some evidence of enamel breakdown due to his severe reflux and vomiting but Dr. B was pleased. He said his teeth look great and the two fused ones on the bottom are of no concern whatsoever. I am especially pleased that he seems to have established great communication with Dr. S already and so he knows how to handle the complex heart kiddo. (if fact, I believe I saw another mom I recognized from Mended Little Hearts in the waiting room as we were leaving.)
Today was another happy doctor visit. We got to go show off what a big boy Tiernan is to Dr. P and Jessica at GI. Dr. P walked in and (after commenting on how fabulous my long dark hair is...love that guy!) admitted both he and Jessica had been nervous about seeing him. They were worried that maybe he wouldn't be doing as well as we had hoped or whatever. It is difficult for them in their line of work to give up control with kids like Tiernan. He has been on such a long and, at times, very scary road with us. I have very much appreciated his willingness to be flexible and trust us as parents and relinquish that micro-management that is so necessary.
Needless to say, however, Tiernan impressed them both with his steady weight/height gains and the wide range of foods he now eats.
Speaking of:
Stats are as follows:
Weight: 27 lbs 4.5 oz 27th percentile!
Height: Just shy of 35 inches 31st percentile!
Weight for Height is 35th percentile. This is perfection. They like cardiac kids to be anywhere from 25th to 50th percentile so he couldn't be any better!
He was so grown up during the exam. Dr. P could hardly believe it! This is a kid who would scream from start to finish but not anymore. He is such a big boy. :)
Admitting that he felt a tad silly asking to see him in 6 months when even cardio doesn't feel compelled to see him for NINE months, he still doesn't feel 100% comfortable going longer than that. Hmm. I get the feeling he doesn't trust T not to do something sneaky. hahaha. He knows him too well.
And truthfully, though I really believe Tiernan is doing great and will only continue to do well for the near future, I am fine with knowing we have a check-in person whenever we need it. Like I said, I am so thankful for Dr. P. He cares so much for our son and takes such joy in all his accomplishments. We are truly blessed with incredible doctors.
The other adorable thing is that Tiernan now has rituals when he goes to GI. At the opposite end of the 3rd floor from GI is a little statue of a bird and some other artwork. He absolutely MUST go visit his bird every time. I don't know why he loves it so much, but clearly he does.
Tiernan did a fabulous job. I just can't believe he ever had an oral aversion! He let Dr. B brush on the flouride treatment and check out his chompers without a single complaint!
I was concerned that he would have some evidence of enamel breakdown due to his severe reflux and vomiting but Dr. B was pleased. He said his teeth look great and the two fused ones on the bottom are of no concern whatsoever. I am especially pleased that he seems to have established great communication with Dr. S already and so he knows how to handle the complex heart kiddo. (if fact, I believe I saw another mom I recognized from Mended Little Hearts in the waiting room as we were leaving.)
Showing off his healthy chompers.
Today was another happy doctor visit. We got to go show off what a big boy Tiernan is to Dr. P and Jessica at GI. Dr. P walked in and (after commenting on how fabulous my long dark hair is...love that guy!) admitted both he and Jessica had been nervous about seeing him. They were worried that maybe he wouldn't be doing as well as we had hoped or whatever. It is difficult for them in their line of work to give up control with kids like Tiernan. He has been on such a long and, at times, very scary road with us. I have very much appreciated his willingness to be flexible and trust us as parents and relinquish that micro-management that is so necessary.
Needless to say, however, Tiernan impressed them both with his steady weight/height gains and the wide range of foods he now eats.
Speaking of:
Stats are as follows:
Weight: 27 lbs 4.5 oz 27th percentile!
Height: Just shy of 35 inches 31st percentile!
Weight for Height is 35th percentile. This is perfection. They like cardiac kids to be anywhere from 25th to 50th percentile so he couldn't be any better!
He was so grown up during the exam. Dr. P could hardly believe it! This is a kid who would scream from start to finish but not anymore. He is such a big boy. :)
Admitting that he felt a tad silly asking to see him in 6 months when even cardio doesn't feel compelled to see him for NINE months, he still doesn't feel 100% comfortable going longer than that. Hmm. I get the feeling he doesn't trust T not to do something sneaky. hahaha. He knows him too well.
And truthfully, though I really believe Tiernan is doing great and will only continue to do well for the near future, I am fine with knowing we have a check-in person whenever we need it. Like I said, I am so thankful for Dr. P. He cares so much for our son and takes such joy in all his accomplishments. We are truly blessed with incredible doctors.
The other adorable thing is that Tiernan now has rituals when he goes to GI. At the opposite end of the 3rd floor from GI is a little statue of a bird and some other artwork. He absolutely MUST go visit his bird every time. I don't know why he loves it so much, but clearly he does.
Wednesday, November 30, 2011
He's a big boy now
T had his cardiology appointment today.
He was a total rockstar.
For the first time EVER he didn't cry or squirm one bit for the duration of the EKG and Echo!
Amazing!
I wish I had been there to see it. Jason took him. Tristan got to go too. I hoped he would check out the Echo stuff, but he said he was too busy watching Curious George. :)
Weight is holding steady right around 27 lbs and he is now 34 inches tall.
His sats were a "perfect" 85 and Dr. S said his Glenn site is wide open and his coarct is unchanged from the last time. The valve leakage is also the same as it was 6 months ago.
By the way...I still can't believe it has been 6 months since his last visit to cardio and we haven't had any issues. None whatsoever!!!!
Oh, and speaking of time between appointments...I am in a state of shock as Jason tells me he does not have to go back in for...wait for it...9...that is N-I-N-E months!!!!!!!!!!!!!!!!! Combined with no GI appointments (after December), that makes...hold on, let me do the calculations...ZERO appointments (except OT) until next SEPTEMBER?!!!!! Is that POSSIBLE?!!!! Shock, I tell you.
Perhaps that is a paraphrase rather than a direct quote, but to translate...his sats are great...there is no stress on his heart...since the Fontan causes all kinds of liver issues etc...we are not even going to talk about it.
Have I mentioned how happy I am that Dr. Stefanelli is in charge of Tiernan's care?
Finally, as if that wasn't enough awesomeness, Chris gave us the go ahead to d/c his Lasix.
wha-wha-WHAT?!
Cold turkey. Gone. See ya later diuretics!
*****Confession*****
As exciting as this is, I am nervous. Last time the Lasix was d/c'd he was in congestive heart failure within 2 months. Now, I know there were many other contributing factors there...like an impossibly narrow aorta, so I am not spending much time worrying, but there is some mild concern. Please pray all goes well and this does not add any stress to his heart function.
I'm so proud of my big boy. I'm sad that this is even a necessary milestone, but it is. Just as Nurse Jodi said, once he is 2 he will cooperate so much better for the echos. She is so smart.
And Tiernan is so awesome! :)
He was a total rockstar.
For the first time EVER he didn't cry or squirm one bit for the duration of the EKG and Echo!
Amazing!
I wish I had been there to see it. Jason took him. Tristan got to go too. I hoped he would check out the Echo stuff, but he said he was too busy watching Curious George. :)
Weight is holding steady right around 27 lbs and he is now 34 inches tall.
His sats were a "perfect" 85 and Dr. S said his Glenn site is wide open and his coarct is unchanged from the last time. The valve leakage is also the same as it was 6 months ago.
By the way...I still can't believe it has been 6 months since his last visit to cardio and we haven't had any issues. None whatsoever!!!!
Oh, and speaking of time between appointments...I am in a state of shock as Jason tells me he does not have to go back in for...wait for it...9...that is N-I-N-E months!!!!!!!!!!!!!!!!! Combined with no GI appointments (after December), that makes...hold on, let me do the calculations...ZERO appointments (except OT) until next SEPTEMBER?!!!!! Is that POSSIBLE?!!!! Shock, I tell you.
An actual conversation between Jason and Dr. S:
J-What are your thoughts regarding the Fontan?
Dr. S.-I don't even want to discuss it until we are close. And although it is not common practice now, within 5 years I expect to see recommendations changing to delaying the Fontan for as long as possible.
Perhaps that is a paraphrase rather than a direct quote, but to translate...his sats are great...there is no stress on his heart...since the Fontan causes all kinds of liver issues etc...we are not even going to talk about it.
Have I mentioned how happy I am that Dr. Stefanelli is in charge of Tiernan's care?
Finally, as if that wasn't enough awesomeness, Chris gave us the go ahead to d/c his Lasix.
wha-wha-WHAT?!
Cold turkey. Gone. See ya later diuretics!
*****Confession*****
As exciting as this is, I am nervous. Last time the Lasix was d/c'd he was in congestive heart failure within 2 months. Now, I know there were many other contributing factors there...like an impossibly narrow aorta, so I am not spending much time worrying, but there is some mild concern. Please pray all goes well and this does not add any stress to his heart function.
I'm so proud of my big boy. I'm sad that this is even a necessary milestone, but it is. Just as Nurse Jodi said, once he is 2 he will cooperate so much better for the echos. She is so smart.
And Tiernan is so awesome! :)
Sunday, November 13, 2011
Oh say can he say...
Mama...and occasionally just Mom
Dada...and occasionally just Dad
Bubba...meaning Brother
All Done...usually comes out sounding more like "Ahhh NUN"
Get Down..."geh dahn"
Please..."eeez"
Again..."ahhh GEN"
Uh uh..."un UHHH" with a a nice consistant sing-song rise and fall on the the second Uh. Oh. and a head shaking no as well. This is said in response to almost everything. If it weren't so adorable it would be annoying. :)
Uh huh..."uh HUH" to be said with a heavy emphasis and an emphatic single head nod on the HUH.
Go..."doh" and no, he has never seen the Simpsons.
and slightly...okay quite a bit...out in left field...
Owl. Yep. Owl. He saw one on TV and completely unprompted by me, he said a clear Owl!
Up.
Choo Choo...."tsoo tsoo"
Everything else is "abba".
(resist the urge to sing Dancing Queen...he's more of a Take A Chance On Me kinda kid)
Every so often he points to an apple and says "abba" so he's kind of right on that one. :)
Oh. And I almost forgot...
AhChoo!
That one usually happens several times in a row and, although sometimes it is random, it generally comes as his imitation of Daddy sneezing. :)
As I write these down I am pretty impressed with his vocabulary to date. He is significantly delayed but this is solid progress! With his lack of words we still have to endure a lot of ear-splitting screaching but that should only improve as his vocabulary expands. I really can't wait to hear that little voice and all the complex thoughts he has going on in that adorable head. :)
Dada...and occasionally just Dad
Bubba...meaning Brother
All Done...usually comes out sounding more like "Ahhh NUN"
Get Down..."geh dahn"
Please..."eeez"
Again..."ahhh GEN"
Uh uh..."un UHHH" with a a nice consistant sing-song rise and fall on the the second Uh. Oh. and a head shaking no as well. This is said in response to almost everything. If it weren't so adorable it would be annoying. :)
Uh huh..."uh HUH" to be said with a heavy emphasis and an emphatic single head nod on the HUH.
Go..."doh" and no, he has never seen the Simpsons.
and slightly...okay quite a bit...out in left field...
Owl. Yep. Owl. He saw one on TV and completely unprompted by me, he said a clear Owl!
Up.
Choo Choo...."tsoo tsoo"
Everything else is "abba".
(resist the urge to sing Dancing Queen...he's more of a Take A Chance On Me kinda kid)
Every so often he points to an apple and says "abba" so he's kind of right on that one. :)
Oh. And I almost forgot...
AhChoo!
That one usually happens several times in a row and, although sometimes it is random, it generally comes as his imitation of Daddy sneezing. :)
As I write these down I am pretty impressed with his vocabulary to date. He is significantly delayed but this is solid progress! With his lack of words we still have to endure a lot of ear-splitting screaching but that should only improve as his vocabulary expands. I really can't wait to hear that little voice and all the complex thoughts he has going on in that adorable head. :)
Saturday, November 5, 2011
A sincere "Great!"
For most of the past 2 years, when met with the common question, "How are you?" I would respond with a cautious "Okay."
But on Thursday, for the first time in a long time, I answered that question with a confident "GREAT!"
And it sort of surprised me. I wasn't fully expecting it. But it made me feel even better!
And that is when it hit me.
We have made it.
To that stable place I had heard about.
Here we are.
And I suddenly thought of several moments from that hellish first year.
I vividly remember one night in the Mary Bridge PICU when things were not going well. Tiernan had just been officially declared to be in severe congestive heart failure again. We were trying to decide whether or not to transport up to Seattle for surgery or if he needed to go down to Stanford instead, and things were just looking so bad. He was screaming and screaming and I had a Terms of Endearment Shirley McLaine moment and lost my mind at the nurses station. And at that moment, Jodi, one of our beloved nurses from cardiology, stopped me and said with a confidence that I am not totally sure she believed (knowing how Dr. S. has recalled that time with Tiernan), "This. Is. Not. The. End! Tiernan IS going to get through this. And you ARE going to be seeing him eat and grow big and strong and you ARE going to be going crazy dealing with the terrible twos and ALL of that!" (now that may not be a direct quote, but it is close.)
And we are here. Terrible Twos. Eating. Big and Strong.
Thank you Jodi!!!! I love you! You have no idea what that meant to me. You have kept me sane more times than I can count.
And I thought of a day I had taked Tiernan over to my beautiful friend Jesse's house for a visit following his DKS/Glenn.
He was on continuous GJ feeds 20 hours a day and medications upwards of 15 times a day. Jesse's son, Luke was 3 and thriving! She went to pull his meds...2 syringes. 2. And I sat there fighting back tears and wanting so badly to be in that place. And I said something to that effect and Jesse reminded me, emphatically, that we would someday get there. Patience.
And we are here. 2 syringes.
Thank you Jesse!!!!! I love you. You are such an amazing gift from God.
And I thought of every time I was feeling completely hopeless and convinced fully that Tiernan would never get rid of that stupid tube. The encouragement from my beautiful "sister" Heather telling me all about how her Asher was finally eating. And his tube was gone. And one day Tiernan's would be too. And to just. be. patient. And to trust God. And, although, I have not always waited with grace, I was patient.
And we are here. No tube. No chronic pain for Tiernan.
Thank you Heather!!!! I love you. You understand what few others do. Thank you for your wisdom.
God has blessed us so completely in all things. I am so thankful for these and countless others for their steadfast encouragement
And the fact remains, we have no idea how long we will stay in this wonderful season, but I am going to live it to the fullest.
But on Thursday, for the first time in a long time, I answered that question with a confident "GREAT!"
And it sort of surprised me. I wasn't fully expecting it. But it made me feel even better!
And that is when it hit me.
We have made it.
To that stable place I had heard about.
Here we are.
And I suddenly thought of several moments from that hellish first year.
I vividly remember one night in the Mary Bridge PICU when things were not going well. Tiernan had just been officially declared to be in severe congestive heart failure again. We were trying to decide whether or not to transport up to Seattle for surgery or if he needed to go down to Stanford instead, and things were just looking so bad. He was screaming and screaming and I had a Terms of Endearment Shirley McLaine moment and lost my mind at the nurses station. And at that moment, Jodi, one of our beloved nurses from cardiology, stopped me and said with a confidence that I am not totally sure she believed (knowing how Dr. S. has recalled that time with Tiernan), "This. Is. Not. The. End! Tiernan IS going to get through this. And you ARE going to be seeing him eat and grow big and strong and you ARE going to be going crazy dealing with the terrible twos and ALL of that!" (now that may not be a direct quote, but it is close.)
And we are here. Terrible Twos. Eating. Big and Strong.
Thank you Jodi!!!! I love you! You have no idea what that meant to me. You have kept me sane more times than I can count.
And I thought of a day I had taked Tiernan over to my beautiful friend Jesse's house for a visit following his DKS/Glenn.
He was on continuous GJ feeds 20 hours a day and medications upwards of 15 times a day. Jesse's son, Luke was 3 and thriving! She went to pull his meds...2 syringes. 2. And I sat there fighting back tears and wanting so badly to be in that place. And I said something to that effect and Jesse reminded me, emphatically, that we would someday get there. Patience.
And we are here. 2 syringes.
Thank you Jesse!!!!! I love you. You are such an amazing gift from God.
And I thought of every time I was feeling completely hopeless and convinced fully that Tiernan would never get rid of that stupid tube. The encouragement from my beautiful "sister" Heather telling me all about how her Asher was finally eating. And his tube was gone. And one day Tiernan's would be too. And to just. be. patient. And to trust God. And, although, I have not always waited with grace, I was patient.
And we are here. No tube. No chronic pain for Tiernan.
Thank you Heather!!!! I love you. You understand what few others do. Thank you for your wisdom.
God has blessed us so completely in all things. I am so thankful for these and countless others for their steadfast encouragement
And the fact remains, we have no idea how long we will stay in this wonderful season, but I am going to live it to the fullest.
Saturday, October 8, 2011
I cannot even begin to convey the joy that fills me every time I see that tube free tummy.
Tiernan is a new kid. I can only compare this to the feeling pregnant women have when they go from the constant blah of the first trimester into the second trimester. So many of us have said that we didn't realize just how awful we felt until we aren't feeling that anymore. I think that must be how he feels. His entire demeanor has transformed. Just imagine when you have experienced chronic pain of any sort and then you can sort of understand how he has been feeling for his entire life. And then imagine how you felt when that pain went away finally. He just has an extra bounce in his step and he really WANTS to eat!!! He pounded down at least 1200 calories yesterday with no trouble!
This may be one of my most favorite pictures of him. Ever.
Sunday, October 2, 2011
Just keep swimming....
In the week since his surgery, Tiernan has visited the surgery clinic twice, spiked a few fevers and regressed significantly on his eating and sleeping.
These just seem like typical speed bumps for him.
Thankfully we seem to be on the other side of them now.
At the clinic on Friday Dr. Holland recommended we remove the dermabond and actively work at blood-letting. His hematoma was beginning to liquify (ew), which is what we want. So after getting the incision to open a bit more, he seems considerably more comfortable. He slept all night again and is eating and drinking almost normally.
Unfortunately, a more open incision means we are still covering that site with heavy duty surgical pads, which we were hoping not to have to deal with anymore. But this will only last a short time and then we will have a closed, and un-infected site.
One of the most important things God has been teaching me through Tiernan is to find the little nuggets of encouragment amidst a whole lot of frustration. Here is an example...
Tiernan has always been difficult to get to sleep. Anyone who has known us for even a week will know that. Although he has been improving for the past several months, it still requires us to snuggle him to sleep. Sometimes that takes 10 minutes and other times it takes an hour and a half. When he is sleeping through the night it is easy to indulge him and do this because we love the snuggles...at 8:30 in the evening. But this past week he has been waking up at around 2 AM and wanting to snuggle...for the rest of the night. This brought me to the brink of insanity yet again, only this time I fought back. I decided it was time (at 3 in the morning on Wednesday) for him to get himself to sleep. So I just put him in his crib and stood there in the dark for about 30 minutes while he screamed. And I prayed God would give me strength to let him work it out. And He did, and Tiernan did. He finally just plopped down and went to sleep. Of course he woke up about a half hour later and Jason started that all over again. And the next night we went through the same thing, but it only took him 15 minutes to give up and go to sleep. And then yesterday at bed time, when he was not falling asleep in my arms, I just put him in his crib and sat there while he talked and played and then finally fell asleep on his own. He only complained once and didn't ever really cry. And then he slept all night. So that will be our new routine. We can snuggle for a few minutes and then I will sit in his room until he falls asleep. Maybe soon we can start to work on him doing that without me in the room, but for now this is a giant improvement.
These just seem like typical speed bumps for him.
Thankfully we seem to be on the other side of them now.
At the clinic on Friday Dr. Holland recommended we remove the dermabond and actively work at blood-letting. His hematoma was beginning to liquify (ew), which is what we want. So after getting the incision to open a bit more, he seems considerably more comfortable. He slept all night again and is eating and drinking almost normally.
Unfortunately, a more open incision means we are still covering that site with heavy duty surgical pads, which we were hoping not to have to deal with anymore. But this will only last a short time and then we will have a closed, and un-infected site.
One of the most important things God has been teaching me through Tiernan is to find the little nuggets of encouragment amidst a whole lot of frustration. Here is an example...
Tiernan has always been difficult to get to sleep. Anyone who has known us for even a week will know that. Although he has been improving for the past several months, it still requires us to snuggle him to sleep. Sometimes that takes 10 minutes and other times it takes an hour and a half. When he is sleeping through the night it is easy to indulge him and do this because we love the snuggles...at 8:30 in the evening. But this past week he has been waking up at around 2 AM and wanting to snuggle...for the rest of the night. This brought me to the brink of insanity yet again, only this time I fought back. I decided it was time (at 3 in the morning on Wednesday) for him to get himself to sleep. So I just put him in his crib and stood there in the dark for about 30 minutes while he screamed. And I prayed God would give me strength to let him work it out. And He did, and Tiernan did. He finally just plopped down and went to sleep. Of course he woke up about a half hour later and Jason started that all over again. And the next night we went through the same thing, but it only took him 15 minutes to give up and go to sleep. And then yesterday at bed time, when he was not falling asleep in my arms, I just put him in his crib and sat there while he talked and played and then finally fell asleep on his own. He only complained once and didn't ever really cry. And then he slept all night. So that will be our new routine. We can snuggle for a few minutes and then I will sit in his room until he falls asleep. Maybe soon we can start to work on him doing that without me in the room, but for now this is a giant improvement.
Saturday, September 24, 2011
Tummy is closed...kinda, sorta.
"If something didn't go wrong that just wouldn't be right."
To quote super awesome cousin-in-law and nurse, Crystal.
The day started out amazingly, and now I will say, suspiciously well.
7 AM check in and pre-op went so smoothly. T was unbelievably chill about the entire thing. He didn't make a fuss through any of the vitals (normally this is a cry fest) and even agreed to be held and carried away by his buddy, Dr. Lord (peds cardiac anesthesiologist) for a moment.
Funny thing...The first thing Dr. L did and said when he came in was hold his hand and say, "Someone's been busy growing some veins." lol. Love that man.
We agreed he would get a little oral versed (a med designed to help with anxiety and generally calms kids for the separation process) and then we just waited. We met Dr. Holland (general surgeon) and he mentioned his surprise at the sheer number of GJ changes this kid had. hahaha. We discovered a shared dislike for GJ tubes in general and I knew I liked him. :)
Then we just waited. T attempted escape a few times and got the nurses laughing.
So they took him away on time and it was clear the versed did not work. Poor kid definitely cared. However, Dr. Lord said he did the mask and then found a vein right away and the surgery was over in under an hour. Dr. Holland came up and said as long as he is comfortable and drinking enough to stay hydrated he would be discharged today, but they sent us up to the med/surg floor for recovery anyway. Just in case.
Tiernan did really well! Usually he is way cranky coming out of anesthesia but this time he was really calm and just wanted to be held and sleep. He chugged a cup of apple juice and then some water and then some more apple juice. He watched some Curious George and slept some more. We were discharged by 2:30!!!!!
We arrived home and he was a little groggy still but decidedly hungry. So he ate several graham crackers, apple sauce and some milk.
He was really curious about the new flatter non leaky tummy terrain. In this photo you can see how the incision site was pretty flat. Well, within a half hour of this one it there was a swellling that extended the length of the wound and out about a half inch all the way around the perimeter. Yowza. Should have taken a comparison photo. Or perhaps you are all glad I did not.
At any rate, about 25 minutes later he was playing and fell backwards and bumped his head. He was more scared than anything but then screamed and cried like crazy. When he calmed down he casually pointed to his belly and I looked and saw what I described in the previous paragraph.
You know that feeling you get in the pit of your stomach when you see your child is hurt? Yeah. Multiply by 10 at least. Meh.
So I elected to call the consulting nurse since I was pretty sure this would fall under that "When to call" section of the d/c paperwork. I was on hold for too long so I just popped him back in the car and off we went to tour the new MB emerg department. I finally spoke to her en route and she attempted, unsuccessfully to locate Dr. Holland or the on call surgeon. She finally did and called me back to tell me to continue on to the ED...when I was already waiting on triage. :) Glad they agreed with me.
So in triage, the very sweet nurse was quite interested in his cardiac history. When I told her he has a murmur she replied, "oh, he must have a really tiny hole then." I said, well, no. And she proceeded to interrupt me and attempt to explain why she was correct and I was incorrect. At this point I very calmly explained that he, in fact, was born with a complete AV canal and his heart functions now as a single ventricle, and in fact is just one big old hole, really. <combination head shake/eye roll>
She was then so wrapped up in his cardiac history that she completely forgot to look at his bulging incision site until after she had taken us to our private room to wait for the doctor. But really, she was sweet. Just a bit silly.
***side note***I hope that if I ever DO become a nurse that I don't behave like I know more about a chronically ill child than the parents of said chronically ill child.
So after waiting close to an hour in the little private room (which I requested so as to not sit in the ED waiting room with whatever germs walked in), I noticed that T was now actively bleeding from his incision. So I stepped out into the hall and flagged down a passing nurse who assisted in getting some gauze and assured me they were cleaning a room right now.
So after another 20 minutes of waiting with a bleeding child, I stepped out again and waited while approximately 17 people walked by until I found a nurse to check once again. She said the triage nurse was shocked I was still waiting. So finally after another 10 minutes we were led back to our room, where we again, waited.
Oh and I was greeted with the requisite "So sorry about the wait. We've been CRAZY tonight". Yes. Got it. What.Ev.Er.
Doc came in. Ordered xrays.
Wait.
Xrays done. He cried but stood perfectly still. Was impressed.
Wait.
Wait some more.
First good news of the night, the xrays did not show anything amiss inside. Meaning, the bowel and stomach were all where they should be. Excellent!!! I'm just going to say that I am glad my mind had not yet imagined those possible complications. Eek!
Waiting on the surgeon to view the pictures and make a recommendation.
Finally, the doc came in and said the surgeon could see no reason why we would need to be admitted. The bleeding is not a major concern given the clear xrays good vitals and his normal behaviour. So new gauze dressing applied, and we were out of there for the second time in one day.
We surmise (J and I, with our extensive medical knowledge) that the tissue was so damaged in there that even the slightest jostling caused the suture(s) to pull out. Dr. H removed a good amount of the bad skin, but couldn't get all of it.
While getting into the car, the sweet valet must have noticed I was a tad on the exhausted side of things and asked, "Long day in there?" I replied, "you don't know the half of it." he waited patiently while I got T into his seat and then walked me over to my door and held it open for me and then closed it for me. I'm sure he does this for everyone, but let me just say, I appreciated it. He was very nice. And I was/am very tired.
Amazingly enough, Tiernan slept all night. (normally after such disruption he is up 18 times) and has woken up with a far less bulgy tummy and a great demeanor.
Sorry if this post is a bit rambly. I am not even going to proof this one. I am not quite as quick to bounce back. haha.
Thanks for all your prayers and awesome juju everyone. We will have a follow up with Dr. Holland on Monday and then another in early October. Soon we will REALLY be able to look at his new scar and remember when...
To quote super awesome cousin-in-law and nurse, Crystal.
The day started out amazingly, and now I will say, suspiciously well.
7 AM check in and pre-op went so smoothly. T was unbelievably chill about the entire thing. He didn't make a fuss through any of the vitals (normally this is a cry fest) and even agreed to be held and carried away by his buddy, Dr. Lord (peds cardiac anesthesiologist) for a moment.
Funny thing...The first thing Dr. L did and said when he came in was hold his hand and say, "Someone's been busy growing some veins." lol. Love that man.
We agreed he would get a little oral versed (a med designed to help with anxiety and generally calms kids for the separation process) and then we just waited. We met Dr. Holland (general surgeon) and he mentioned his surprise at the sheer number of GJ changes this kid had. hahaha. We discovered a shared dislike for GJ tubes in general and I knew I liked him. :)
Then we just waited. T attempted escape a few times and got the nurses laughing.
He played with his beads of courage....he earned several new ones as well
And his special Luke Skywalker Mariner Bear (yes...that is his full given name) that Tristan made for him the day we found out he was a Tiernan and did NOT find out about his heart. (sorry...bitterness sneaks in every once in a while). Anyway, Luke Bear has a special button in his foot that, when pushed, plays the sweetest little 5 year old Tristan voice saying, "I like you Tiernan." Tiernan plays that over and over and over. We are worried it will wear out at some point. :(
So they took him away on time and it was clear the versed did not work. Poor kid definitely cared. However, Dr. Lord said he did the mask and then found a vein right away and the surgery was over in under an hour. Dr. Holland came up and said as long as he is comfortable and drinking enough to stay hydrated he would be discharged today, but they sent us up to the med/surg floor for recovery anyway. Just in case.
We arrived home and he was a little groggy still but decidedly hungry. So he ate several graham crackers, apple sauce and some milk.
At any rate, about 25 minutes later he was playing and fell backwards and bumped his head. He was more scared than anything but then screamed and cried like crazy. When he calmed down he casually pointed to his belly and I looked and saw what I described in the previous paragraph.
You know that feeling you get in the pit of your stomach when you see your child is hurt? Yeah. Multiply by 10 at least. Meh.
So I elected to call the consulting nurse since I was pretty sure this would fall under that "When to call" section of the d/c paperwork. I was on hold for too long so I just popped him back in the car and off we went to tour the new MB emerg department. I finally spoke to her en route and she attempted, unsuccessfully to locate Dr. Holland or the on call surgeon. She finally did and called me back to tell me to continue on to the ED...when I was already waiting on triage. :) Glad they agreed with me.
So in triage, the very sweet nurse was quite interested in his cardiac history. When I told her he has a murmur she replied, "oh, he must have a really tiny hole then." I said, well, no. And she proceeded to interrupt me and attempt to explain why she was correct and I was incorrect. At this point I very calmly explained that he, in fact, was born with a complete AV canal and his heart functions now as a single ventricle, and in fact is just one big old hole, really. <combination head shake/eye roll>
She was then so wrapped up in his cardiac history that she completely forgot to look at his bulging incision site until after she had taken us to our private room to wait for the doctor. But really, she was sweet. Just a bit silly.
***side note***I hope that if I ever DO become a nurse that I don't behave like I know more about a chronically ill child than the parents of said chronically ill child.
So after waiting close to an hour in the little private room (which I requested so as to not sit in the ED waiting room with whatever germs walked in), I noticed that T was now actively bleeding from his incision. So I stepped out into the hall and flagged down a passing nurse who assisted in getting some gauze and assured me they were cleaning a room right now.
So after another 20 minutes of waiting with a bleeding child, I stepped out again and waited while approximately 17 people walked by until I found a nurse to check once again. She said the triage nurse was shocked I was still waiting. So finally after another 10 minutes we were led back to our room, where we again, waited.
Oh and I was greeted with the requisite "So sorry about the wait. We've been CRAZY tonight". Yes. Got it. What.Ev.Er.
Doc came in. Ordered xrays.
Wait.
Xrays done. He cried but stood perfectly still. Was impressed.
Wait.
Wait some more.
First good news of the night, the xrays did not show anything amiss inside. Meaning, the bowel and stomach were all where they should be. Excellent!!! I'm just going to say that I am glad my mind had not yet imagined those possible complications. Eek!
Waiting on the surgeon to view the pictures and make a recommendation.
Finally, the doc came in and said the surgeon could see no reason why we would need to be admitted. The bleeding is not a major concern given the clear xrays good vitals and his normal behaviour. So new gauze dressing applied, and we were out of there for the second time in one day.
We surmise (J and I, with our extensive medical knowledge) that the tissue was so damaged in there that even the slightest jostling caused the suture(s) to pull out. Dr. H removed a good amount of the bad skin, but couldn't get all of it.
While getting into the car, the sweet valet must have noticed I was a tad on the exhausted side of things and asked, "Long day in there?" I replied, "you don't know the half of it." he waited patiently while I got T into his seat and then walked me over to my door and held it open for me and then closed it for me. I'm sure he does this for everyone, but let me just say, I appreciated it. He was very nice. And I was/am very tired.
Amazingly enough, Tiernan slept all night. (normally after such disruption he is up 18 times) and has woken up with a far less bulgy tummy and a great demeanor.
Sorry if this post is a bit rambly. I am not even going to proof this one. I am not quite as quick to bounce back. haha.
Thanks for all your prayers and awesome juju everyone. We will have a follow up with Dr. Holland on Monday and then another in early October. Soon we will REALLY be able to look at his new scar and remember when...
Friday, September 2, 2011
better than expected
so even though i expected Dr. P. to declare his stoma infected, he did not!
yet.
what he did say, was that he feels it looked better than HE expected it to, and that it is on the verge of being closed.
and it has some signs of yeast.
so I suppose there is some infection, but not the sort we are concerned about.
here's the vicious circle in which we have been stuck:
chronically inflamed stoma takes longer to heal
stoma is leaking because it is taking longer to heal
we cannot leave the stoma open to air (which would pomote drying and healing) because it is leaking
stoma is becoming even more inflamed because it is leaking and we have to keep it covered so the acids are just sitting on the inflamed skin.
skin is "friable" (fragile, easily torn) due to the contact with the stomach acid.
inflamation causes longer healing time.
etc...
you get the picture.
Dr. P. thought that since it is so near to closure, we could attempt to keep it closed with the use of surgical glue and steri strips. he has seen minimal success in a few other patients using this method so we figured it is worth a shot.
honestly, during the time we were there, though it leaked, it was not as bad as it had been earlier today or in the past week. so that was encouraging. we will see what things look like tonight since having it glued shut.
possible problem:
if Tiernan pulls at it just right the glue can just rip off, and that would certainly cause much pain and bleeding because of his friable skin. EEK!
on a side note, Dr. P was super impressed with the cool wrap Nanny K designed to use instead of the cumbersome ace wrap. he agrees with me that she needs to start an etsy site for all the great inventions she has come up with to help us with Tiernan's special needs. i know loads of other tubie moms and dads would love these things. and it seems the clinic could promote them for her as well. :) (that is unofficial, but i think they should)
so, we will call on monday with a report of how epically it failed or [fingers crossed] that it was a huge success. if failure is the word, we will get Dr. S (cardio) on board for his opinion on how he would like us to proceed:
1. propofol sedation in either GI lab or OR for endoscopic stapling...knowing it may or may not work. often they need to repeat this procedure a few times.
or
2. general surgery with either Dr. Lord or Dr. Borman (peds cardiac anaesthesiologists) to fully repair the site.
hard to speculate how Dr. S will lean on this one. hopefully we won't need to find out and the super glue will do the trick!
thanks for all the prayers and good juju on our behalf. it all makes an enormous difference!
yet.
what he did say, was that he feels it looked better than HE expected it to, and that it is on the verge of being closed.
and it has some signs of yeast.
so I suppose there is some infection, but not the sort we are concerned about.
here's the vicious circle in which we have been stuck:
chronically inflamed stoma takes longer to heal
stoma is leaking because it is taking longer to heal
we cannot leave the stoma open to air (which would pomote drying and healing) because it is leaking
stoma is becoming even more inflamed because it is leaking and we have to keep it covered so the acids are just sitting on the inflamed skin.
skin is "friable" (fragile, easily torn) due to the contact with the stomach acid.
inflamation causes longer healing time.
etc...
you get the picture.
Dr. P. thought that since it is so near to closure, we could attempt to keep it closed with the use of surgical glue and steri strips. he has seen minimal success in a few other patients using this method so we figured it is worth a shot.
honestly, during the time we were there, though it leaked, it was not as bad as it had been earlier today or in the past week. so that was encouraging. we will see what things look like tonight since having it glued shut.
possible problem:
if Tiernan pulls at it just right the glue can just rip off, and that would certainly cause much pain and bleeding because of his friable skin. EEK!
on a side note, Dr. P was super impressed with the cool wrap Nanny K designed to use instead of the cumbersome ace wrap. he agrees with me that she needs to start an etsy site for all the great inventions she has come up with to help us with Tiernan's special needs. i know loads of other tubie moms and dads would love these things. and it seems the clinic could promote them for her as well. :) (that is unofficial, but i think they should)
so, we will call on monday with a report of how epically it failed or [fingers crossed] that it was a huge success. if failure is the word, we will get Dr. S (cardio) on board for his opinion on how he would like us to proceed:
1. propofol sedation in either GI lab or OR for endoscopic stapling...knowing it may or may not work. often they need to repeat this procedure a few times.
or
2. general surgery with either Dr. Lord or Dr. Borman (peds cardiac anaesthesiologists) to fully repair the site.
hard to speculate how Dr. S will lean on this one. hopefully we won't need to find out and the super glue will do the trick!
thanks for all the prayers and good juju on our behalf. it all makes an enormous difference!
Thursday, August 25, 2011
Tiernan's Tube...
...is gone.
I go on to list all sorts of things that now I have to laugh at. I honestly thought all night feeds would help him sleep, he would not be likely to pull it out, and he would not have as many oral aversions. [shakes head] So very naive.
From the very start, T made it clear he was NOT on board with this whole thing. Read on.
************************************
Thursday, January 21, 2010 6:19 PM, PST
My goodness what a week! Tiernan really let us know what he thought of that GJ tube placement! The day following, he was all smiles again and then he decided he wasn't happy after all. He went into an absolute rage, turned purple and his heart rate raced to 220! The doctors gave him a medicine to slow his heart down but it didn't work and he didn't respond to any of the narcotics that should work. They finally had to give him a drug to sedate him so they could check his heart rhythms. They were worried he was having SVTs. Those are disrhythmias in the heart and can cause a lot of problems. However, once his heart rate slowed and they got him hooked up to an EKG they discovered his rhythms were fine, they were just really fast. (Called Sinus tachycardia-we all have it sometimes). So they got him calmed down and sleeping and did an echo to check on his heart. Everything looked great on the echo which was a relief! So just as this was wrapping up, J and I had to go to our class for GJ tube training. (A thrill a minute). So Jodi, one of our amazing Heart Center nurses said she would stick around and text me updates. She even sent a picture of him sleeping peacefully. (Not sure what we would do without her!)
That night he had another significant episode, but this time it involved him holding is breath and his heart rate dropping to around 90. They finally placed him on a fentanyl drip around 11 that night. (They waited far too long, as far as I was concerned ). The next day he worked on weaning off the narcotic and beginning feeds and today he was doing much better. Even though he was crying when I arrived this am, he calmed down immediately when I held him. It is nice to see him acting like a normal baby in that respect.
************************************
Saying "bye bye" to the tubie.
There were tears. Then he checked out the tubie...separate from his tummy.
Blurry, but he is showing off his tubie free (wrapped) tummy.
There are some pretty mixed emotions going on in my brain. The overriding one is definitely relief. I went back and read through my caring bridge posts surrounding the tube placement.
The mere mention of a GJ tube was enough to upset me...I have anxiety because I don't want to deal with a child who won't eat. But following discussions with the GI doc, Melissa (one of the amazing nurses from the Heart Center) and numerous other people, I am trying to accept it for the benefits it would have.
I go on to list all sorts of things that now I have to laugh at. I honestly thought all night feeds would help him sleep, he would not be likely to pull it out, and he would not have as many oral aversions. [shakes head] So very naive.
From the very start, T made it clear he was NOT on board with this whole thing. Read on.
************************************
Thursday, January 21, 2010 6:19 PM, PST
My goodness what a week! Tiernan really let us know what he thought of that GJ tube placement! The day following, he was all smiles again and then he decided he wasn't happy after all. He went into an absolute rage, turned purple and his heart rate raced to 220! The doctors gave him a medicine to slow his heart down but it didn't work and he didn't respond to any of the narcotics that should work. They finally had to give him a drug to sedate him so they could check his heart rhythms. They were worried he was having SVTs. Those are disrhythmias in the heart and can cause a lot of problems. However, once his heart rate slowed and they got him hooked up to an EKG they discovered his rhythms were fine, they were just really fast. (Called Sinus tachycardia-we all have it sometimes). So they got him calmed down and sleeping and did an echo to check on his heart. Everything looked great on the echo which was a relief! So just as this was wrapping up, J and I had to go to our class for GJ tube training. (A thrill a minute). So Jodi, one of our amazing Heart Center nurses said she would stick around and text me updates. She even sent a picture of him sleeping peacefully. (Not sure what we would do without her!)
That night he had another significant episode, but this time it involved him holding is breath and his heart rate dropping to around 90. They finally placed him on a fentanyl drip around 11 that night. (They waited far too long, as far as I was concerned ). The next day he worked on weaning off the narcotic and beginning feeds and today he was doing much better. Even though he was crying when I arrived this am, he calmed down immediately when I held him. It is nice to see him acting like a normal baby in that respect.
************************************
Well, from that day on, he gagged and retched and the tube was pulled out more times than I can remember, and, well, his sleeping sucked. To be honest, the tube part of his life has been the most frustrating experience. So really, I am overwhelmingly happy to have it gone.
That said, I am nervous. He has only been eating on his own for slightly over a month and we have not yet broken him of his manipulative pukefests, so yeah. I have anxiety.
It has been messy. He promptly soaked through 2 gauze/ace bandage dressings. He stayed dry overnight and it looked like it might be closing slightly. But it is sooooo red. The tube hid so much of the irritation. Seeing it now is so upsetting to me. Poor boy. I am concerned it may get infected in this process, but worry is no good for anyone, so we will just wait and see how he does.
We will keep it wrapped for the next 2 days and then begin leaving it open to air except during meals and OT sessions.
Thank you all for the copious amounts of encouragement and support you have given during this nearly 2 year ordeal. I know he would not be where he is today without having had it, but I will certainly not be waxing nostalgic over this experience.
Wednesday, August 17, 2011
Drumroll please......
See that tube? It's days are numbered!
For the first time since May 27th, Tiernan has gained weight.
Considerable weight.
For the past several months he has held firm at 24 lbs 1.5 oz.
But today?
Today, he is 25 lbs 5.1 oz!
And that is since his last weight at GI on June 27th.
Oh, and may I remind you all that he has been tube free since July 21st?
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am beyond thrilled with this news!
He had a gain of OVER A POUND eating
all. by. him. self!
But wait! That's not all!
In a matter of days, yes, days, we will more than likely be, as Dr. Stefanelli (cardio) says, "popping that button out of his belly"!
In case you missed that, I'll say it again.
Within days, we will be taking the tube out for good.
I kind of hope they say to take it out on Friday.
Friday is his 2nd birthday. That would be an awesome way to celebrate him turning 2.
The ONLY somewhat frustrating part of this whole visit was due to a lack of communication and consensus on the part of the dietitians. Several months ago, you may recall if you are a faithful reader here, Judy (whom we don't usually see) recommended we use the tv and distractions to get him to eat. I, somewhat reluctantly and guilt ridden, complied, figuring we would trade that bad habit for lots of calories and deal with the habit later.
Apparently now is later.
Today, Jessica, Tiernan's main dietitian, said absolutely not. We should not be doing that. So I am trying to put aside my considerable irritation with them for not presenting the same information to patients they share and begin the retraining process. So now we need to eliminate any grazing and only feed him or allow milk every 2 to 3 hours. We need to establish clear "cues" that show him it is time to eat, and turn it into play time.
[sigh]
Got it.
The only reason I am okay with this is that Jessica is fully aware and accepts the fact that he won't be getting 1000 calories per day anymore. At least in the short term. She is also okay with a possible weight loss if that is the result.
So with the imminent removal of our safety net, we will be trading one challenge for another. That is a fact. However, I am beyond ready for this challenge. I know he will continue to improve at this chore called eating. I hope he might even someday learn to enjoy food.
Please pray things go well with the removal. We will attempt the least invasive method first. We will remove the tube and cover it with gauze and an ace bandage for a few days. When it is somewhat closed, we need to leave it open to air for several hours each day. During meals we can cover it and then wait a half hour and remove it again.
It will mean only sponge baths until it is completely closed.
It will mean leaking when he coughs or laughs or cries hard.
It might not close on it's own.
And let's face it. As my friend Amy says, there are Most Kids, there are Some Kids and then there is Tiernan. :) The mere fact that he is getting his tube out only a month after ending tube feeds is pretty unusual. Most Kids keep it without using it for 6 months or so. But not Tiernan. If there is a road less taken, Tiernan generally finds it and takes it.
That road could include a laproscopic surgery to staple it from inside.
Again, that sometimes doesn't fully work either.
I suspect he may need the following intervention.
General surgery to stitch it all up on the outside.
We shall see. I guess it can take up to a month to close on its own, so we will have to wait and see what his little body does.
Please pray he thrives without this tube. Some kids have to have them replaced. This would be a horrible setback.
In the meantime, rather than worry, we will celebrate all his victories!
Adios Tubie!!!! Don't come back. :)
Sunday, July 24, 2011
there's no place like home
especially for a kiddo with eating issues.
wow. [shakes head in amazement]
last tuesday we returned from tiernan's first road trip to montana. you can read more about that on the TnT Brothers blog if you like.
prior to leaving, the wee t had made such fantastic progress on the wean from his GT. he was regularly eating and drinking over 1000 calories each day all on his own. he was doing so well, in fact, that we had eliminated his weany little 120 mL bolus altogether for the last 2 days before traveling. he was sleeping through the night. all was well.
until...
[cue dramatic music]
we embarked on our epic adventure.
and then he went on strike.
he stopped eating most everything. it was a daily battle of the wills to get him to eat things he normally gobbles up. our big ticket items like yogurt, avocado and cheese were pretty much unacceptable.
he would eat crackers, fruit and IF i followed him around outside i could sneak in bites of cheese and fruit bar while he was on the go. oh, and he drank his milk.
the other problem was he would get mad by the end and we were so desperate to get food in him we kept pushing and that inevitably resulted in massive pukeage.
and it took j and me a surprisingly long time to realize that he is, in fact, in charge of what goes in his mouth and if we force it, we will be sorry. and also covered in puke.
by the last 3 or 4 days of the trip we had relinquished control and tried to trust that he would return to his previous eating patterns upon return home.
this whole process was stressful and frustrating and messy and yet, i have come away having learned a great deal about my child.
are you ready for this?
he is a normal 2 year old when it comes to his philosophy on eating.
he wants to be in charge and do it himself. if he can't do that then forget about it.
i had two really wonderful visits with some dear friends during this visit. camille and emily. they are two beautiful and fantastic mothers from whom i got much encouragement and understanding.
Camille:
we met when I was a first year baby of a teacher at Big Sky High School. She was a junior in my advanced girls choir. we got along so well that when i moved out to washington we have become friends via fb. (love that fb)
anyway, she has 2 gorgeous little girls, the youngest of whom is like tiernan's female alter ego, only without the heart stuff. man. she is so similar to t with her lack of eating. although, where tiernan will eat better with distractions, this little one can't have ANY distractions. zero. a phone ringing during meal time will derail her. camille looks at going on vacation as a time when her baby will lose weight. ugh. so frustrating. ultimately, i must say, camille is amazing with her and inspiring to me. it is so helpful to have a dear friend to commiserate with throughout these experiences. fortunately i have several.
Emily:
we have been friends since high school. she has 3 beautiful and creative little girls who all just eat, eat, eat! her youngest is a few months older than tiernan and she was an absolute marvel to me! the girl can pack it away! awe inspiring.
see that bowl there? full of cereal? that little one ate all of it and then a second helping! now, emily said that is unusual...she was really hungry that morning, but even one bowl full is so cool to see. i think tiernan was impressed too.
not enough to copy her, but impressed even so.
at one point a question was asked...
is is difficult to see other kids eat so well?
interestingly, i can't recall if emily asked me this or if i asked myself. hmmm.
either way, the answer is yes. and no. watching a child eat and really enjoy food is exciting to watch and super annoying at the same time. honestly though, i get more joy than frustration.
and watching emily's approach to mothering reinforced what i was already beginning to suspect.
i need to let tiernan do it.
and since arriving home, he has...more or less.
by our 2nd full day home, i had already eliminated his bolus again. we are officially 5 days into the complete wean and he is doing great. mostly because we are trying to let go.
he is so much more willing to eat things that we put on his tray if he can pick them up and we just back off. i am even finding he needs less and less tv to distract. he hasn't thrown up once since we got home.
*******side note*******
i suspect the altitude in missoula messed a bit with his tummy. could it be that his heart had to work harder and was affecting the way his entire system worked? don't know. a question for Dr. S
so, it appears we are back on track and though we had a wonderful time in missoula, i do NOT intend to leave home very often.
wow. [shakes head in amazement]
last tuesday we returned from tiernan's first road trip to montana. you can read more about that on the TnT Brothers blog if you like.
prior to leaving, the wee t had made such fantastic progress on the wean from his GT. he was regularly eating and drinking over 1000 calories each day all on his own. he was doing so well, in fact, that we had eliminated his weany little 120 mL bolus altogether for the last 2 days before traveling. he was sleeping through the night. all was well.
until...
[cue dramatic music]
we embarked on our epic adventure.
and then he went on strike.
he stopped eating most everything. it was a daily battle of the wills to get him to eat things he normally gobbles up. our big ticket items like yogurt, avocado and cheese were pretty much unacceptable.
he would eat crackers, fruit and IF i followed him around outside i could sneak in bites of cheese and fruit bar while he was on the go. oh, and he drank his milk.
the other problem was he would get mad by the end and we were so desperate to get food in him we kept pushing and that inevitably resulted in massive pukeage.
and it took j and me a surprisingly long time to realize that he is, in fact, in charge of what goes in his mouth and if we force it, we will be sorry. and also covered in puke.
by the last 3 or 4 days of the trip we had relinquished control and tried to trust that he would return to his previous eating patterns upon return home.
this whole process was stressful and frustrating and messy and yet, i have come away having learned a great deal about my child.
are you ready for this?
he is a normal 2 year old when it comes to his philosophy on eating.
he wants to be in charge and do it himself. if he can't do that then forget about it.
i had two really wonderful visits with some dear friends during this visit. camille and emily. they are two beautiful and fantastic mothers from whom i got much encouragement and understanding.
Camille:
we met when I was a first year baby of a teacher at Big Sky High School. She was a junior in my advanced girls choir. we got along so well that when i moved out to washington we have become friends via fb. (love that fb)
anyway, she has 2 gorgeous little girls, the youngest of whom is like tiernan's female alter ego, only without the heart stuff. man. she is so similar to t with her lack of eating. although, where tiernan will eat better with distractions, this little one can't have ANY distractions. zero. a phone ringing during meal time will derail her. camille looks at going on vacation as a time when her baby will lose weight. ugh. so frustrating. ultimately, i must say, camille is amazing with her and inspiring to me. it is so helpful to have a dear friend to commiserate with throughout these experiences. fortunately i have several.
Emily:
we have been friends since high school. she has 3 beautiful and creative little girls who all just eat, eat, eat! her youngest is a few months older than tiernan and she was an absolute marvel to me! the girl can pack it away! awe inspiring.
see that bowl there? full of cereal? that little one ate all of it and then a second helping! now, emily said that is unusual...she was really hungry that morning, but even one bowl full is so cool to see. i think tiernan was impressed too.
not enough to copy her, but impressed even so.
at one point a question was asked...
is is difficult to see other kids eat so well?
interestingly, i can't recall if emily asked me this or if i asked myself. hmmm.
either way, the answer is yes. and no. watching a child eat and really enjoy food is exciting to watch and super annoying at the same time. honestly though, i get more joy than frustration.
and watching emily's approach to mothering reinforced what i was already beginning to suspect.
i need to let tiernan do it.
and since arriving home, he has...more or less.
by our 2nd full day home, i had already eliminated his bolus again. we are officially 5 days into the complete wean and he is doing great. mostly because we are trying to let go.
he is so much more willing to eat things that we put on his tray if he can pick them up and we just back off. i am even finding he needs less and less tv to distract. he hasn't thrown up once since we got home.
*******side note*******
i suspect the altitude in missoula messed a bit with his tummy. could it be that his heart had to work harder and was affecting the way his entire system worked? don't know. a question for Dr. S
so, it appears we are back on track and though we had a wonderful time in missoula, i do NOT intend to leave home very often.
he really likes to just have his bag and reach in to get his treats. :)
he has discovered the joys of Flynn Sauce aka ketchup. the fries were okay, merely as a delivery vehicle for the ketchup. and if he couldn't do it on his own, he wouldn't do it.
Wednesday, July 20, 2011
beads of courage
we got home from 10 days in montana yesterday. (and that will be a whole other post)
tiernan's "beads of courage" had arrived!
the following is a photo series of all his beads and what test, surgery, iv, milestone he went through to earn them.
tiernan's "beads of courage" had arrived!
the following is a photo series of all his beads and what test, surgery, iv, milestone he went through to earn them.
if you can't see it, the little bag they sent has yellow sports cars on it. way cool!
All of his beads. Every color and shape represents something he has endured.
These are special selection beads that represent 3 significant or extraordinary events. The purple one is for his initial diagnosis. the olive and blue swirly one is for the night he crashed and was reintubated and the light green with orange bubbles is for the tachycardia episode he experienced following his G tube placement. He has been through so much!
These 3 beads represent being discharged from hospitalizations. They are handmade by members of the International Society of Glass Beadmakers. a few of them came with these sweet notes of encouragement, making them all the more treasured.
this bead was made specially for Tiernan and sponsored by someone inspired by his story. truly precious to us.
the next groups of beads are estimated numbers of the different experiences. i am sure they are low estimates but the impact is stunning nonetheless.
80
75
33
52
15
3
30
50
15
and these glow in the dark. :)
40
3
these represent most of the first 5 months of his life.
11
2
3
10
these are purple, by the way. the color did not come through.
3
these are for him learning to crawl and walk after all that hard work at OT, switching from his GJ to his GT feeds and starting to eat and drink orally. soon i hope we can add one for getting rid of that button all together!!
5
these little pink beads represent some of the most terrifying days of our lives.
4
GT placement, GJ placement, wound cleaning surgery and 1 for good measure.
(i cannot think of what it was.)
4
these are dark green. again, the color did not show up.
5
2
3
i look at these as the 3 big ones. there have been several other admissions, but not overnighters.
so 448 beads later, jason and i sat together on our couch and strung them all together. after much discussion, we decided to group them all together by type rather than go with the random method. while i like the random look better, jason made the excellent point that the impact of seeing all of those beads grouped together is more intense. so that is what we did.
he loved the sound they made on the floor.
i cannot explain what these beads mean to me. they are this beautiful representation of all the pain and fear and triumphs our brave boy has been through in just 24 months of life. this strand will grow. unfortunately it will likely grow much, much longer. but i pray these serve as the intended reminder of just how tough and courageous he is and has always been.
i look at these as the 3 big ones. there have been several other admissions, but not overnighters.
so 448 beads later, jason and i sat together on our couch and strung them all together. after much discussion, we decided to group them all together by type rather than go with the random method. while i like the random look better, jason made the excellent point that the impact of seeing all of those beads grouped together is more intense. so that is what we did.
this morning when he woke up he knew just what to do with those beads.
he loved the sound they made on the floor.
i cannot explain what these beads mean to me. they are this beautiful representation of all the pain and fear and triumphs our brave boy has been through in just 24 months of life. this strand will grow. unfortunately it will likely grow much, much longer. but i pray these serve as the intended reminder of just how tough and courageous he is and has always been.
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