Messy Miracles, a good analogy for our children. Anyone who knows us, life here is usually messy in one way or another. We don't focus on the past messes, just learn to deal with the one at hand and move on. But sometimes, those messes are where the real family moments happen and where true, unquestionable bond of love can be found.
Sunday, May 10, 2015
Messy Miracles in the Making. . .: Mother's Day
Messy Miracles in the Making. . .: Mother's Day: Though a bit outdated, it is one of my absolute favorites. This was an amazing day! Happy Mother's Day! This day has meaning to ...
Mother's Day
| Though a bit outdated, it is one of my absolute favorites. This was an amazing day! |
| Yep, me as a wee one before my life unfolded. |
| My mother. My inspiration. |
Without my mom, well. . . I wouldn't be here!! She set the wheels in motion for my life to unfold, and though maybe not always in the way I think she wanted; it was in the way I wanted. However, because of my mom (and dad) I knew I would live a unique, wonderful, interesting and loving life.
| Beautiful Ethel. |
Five of my children arrived in this world without me having any idea of their amazing grand entrances. For those not aware of some of the amazing starts to life my children have had, head back into the past posts. But over time, each was presented to me in a different way, in a different place and through different means, but each was meant from the day they were born, to be my child. I thank each and every one of those moms for having the honor of raising their children, regardless of the circumstances surrounding their lives. Even the mother who was ultimately responsible for my daughter's passing. . . I was blessed to have her as my daughter and I loved her like a mother and I knew it was time to let her go. .. like a mother. I had an incredibly short, albeit, intense, relationship with my daughter, Ethel. She was beautiful, chunky and loved. She had a father, brothers and sisters (one of whom talks of her to this day). I held her with all the love of a mother as I offered her over to the doctors to take away the seizures, knowing the treatment would take her away as well. I was her mom until the end. I am still her mom.
My other incredible children are here, happy, healthy (in a very relative term) and create my need to breath each and every day. Their mothers, some of whom I KNOW think of them and love their son's still, are human. I know they want to know they made the right choice and I only hope they know and feel in their hearts the peace that they did. The others, I don't know. I don't know if they remember their children through the haze of drugs and street life. One we are fairly confident has been deceased for a long time. But, I am still thankful for them. I am thankful for the wonderful creations bestowed upon them and ultimately me. I am a mom because they became moms. That's wonderfully cool, regardless of the narrative before our stories began.
| Not one of our best, but got tired of looking when I should be doing my final exam. LOL |
I was also incredibly blessed to have two homegrown children as well. Both, HUGE surprises (thus all the adoptions heehehe). Joshua's life was complicated by so many things. I am often asked "Did you know about so and so's medical issues before hand? I don't think I could do that if I knew." Well, biology does not protect you from malady. I was young, healthy, and did all the right things and my homegrown, fully biological son had a brain tumor that almost killed him. There are no guarantees in life we will get perfection. As far as I'm concerned both of my awesome homegrown children are perfect and all of my adopted children are perfect, just sit and talk with them for a few moments and you'll see just how deep their souls, their zest for life and their love for our family is.
| We love our selfies! |
So, as I celebrate my 25 year as a mother, I am reminded of all those who are mothers in so many capacities. Grieving mothers, mothers who gave children up for adoption, mothers who adopted, step-mothers, mother-in-laws, and mothers of mothers. What a big wonderful world created and maintained by the love of mothers. Hugs to each and every mother far and wide. May you feel love and peace today.
HAPPY MOTHER'S DAY!!!
Friday, May 1, 2015
Put Your Right Pit In. . . .
Just thought I'd share a few tid bits from this week. ..
As I was standing in the kitchen I heard Joshua in the bathroom singing "Put your right pit in, put your right pit out. . . . you know the song. . . . and shake it all about". I looked in to see what "pit" he was referring to and found him moving his hips back and forth (yes, while peeing. . . .ewww). I asked "Do you mean "HIPS" not "PITS"?? He was shocked it was the wrong word! I told him if he wore his hearing aids he'd hear the differences in the words! It was a great laugh for me though.
A couple of days later, Tray states, "These jeans are really tight." I explained that they had been dried on the clothes line so they need to be stretched out and suggested some squats to loosen them up. He proceeds to do several full length lunges up and down the hallway. Then he asks "Are you trying to tell me I'm getting to fat or something (he definitely isn't)?" Totally confused now, I get up to see what the issue is. He's standing there with what look like painted on jeans, unable to even bend his knees. I laughed so hard. . . he had my jeans on!! Ever see the Seinfeld episode with Kramer and his tight jeans? Yep, it was that funny.
Marriela has planned out her entire life thus far. The other night she reiterated that she is moving to North Carolina (because they have better hospitals according to one family vlog who lives in NC to have babies at). She reiterated her desire to "have shots to have sextuplets", I need to thank Kate Plus Eight for that lovely learning curve. She is NEVER going to go in a pond because she does not want a baby from the tadpoles, that little educative doozy goes out to the opening scene in Look Who's Talking Now. She then enlightened us on her occupational prospects she is considering to support these children.
Here's some quotes:
As I was standing in the kitchen I heard Joshua in the bathroom singing "Put your right pit in, put your right pit out. . . . you know the song. . . . and shake it all about". I looked in to see what "pit" he was referring to and found him moving his hips back and forth (yes, while peeing. . . .ewww). I asked "Do you mean "HIPS" not "PITS"?? He was shocked it was the wrong word! I told him if he wore his hearing aids he'd hear the differences in the words! It was a great laugh for me though.
A couple of days later, Tray states, "These jeans are really tight." I explained that they had been dried on the clothes line so they need to be stretched out and suggested some squats to loosen them up. He proceeds to do several full length lunges up and down the hallway. Then he asks "Are you trying to tell me I'm getting to fat or something (he definitely isn't)?" Totally confused now, I get up to see what the issue is. He's standing there with what look like painted on jeans, unable to even bend his knees. I laughed so hard. . . he had my jeans on!! Ever see the Seinfeld episode with Kramer and his tight jeans? Yep, it was that funny.
Marriela has planned out her entire life thus far. The other night she reiterated that she is moving to North Carolina (because they have better hospitals according to one family vlog who lives in NC to have babies at). She reiterated her desire to "have shots to have sextuplets", I need to thank Kate Plus Eight for that lovely learning curve. She is NEVER going to go in a pond because she does not want a baby from the tadpoles, that little educative doozy goes out to the opening scene in Look Who's Talking Now. She then enlightened us on her occupational prospects she is considering to support these children.
Here's some quotes:
- I'm going to college for something like swimming so I can get a gold medal. They do pay you for a gold medal right? (I proceeded to remind her that she has yet to successfully even float in a pool or let go of the edge and she's almost 13). She countered with, Then I'll dance for money. I just left that one alone.
- If I don't make enough for diapers then I will marry a rich white husband from Match.com. (I am truly comforted by the fact that she has a back up plan for the dancing gig.)
Well, that's all for now folks. Just thought a little glimpse into the world of the Curkendall's would make you all feel a tad saner. I am to help.
Have a fantastic day on this awesome first of May!!!
Renee
Saturday, April 25, 2015
Timeline of Septic Shock
January 20th
I receive a call, Sergio has a fever. Off to the school I go, get him, draw labs, cultures, start antibiotics. He gets hotter and hotter. I give a dose of toradol and Tylenol. He finally cools down.
January 21st
3:00 am, my phone rings. Sergio is 103 degrees. I come to his room and find him shaking violently as he spikes one of his very high temps. His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids. His heart rate is in the 190's. I know he has a severe line infection (thanks to his usless gut).
4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105. I've already started everything needed for the sepsis protocol the ER uses. So we sit and wait for a room, while he cooks and I watch the monitor.
6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something. She orders a bolus of fluid. We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.
7:00 am the PICU doctor is consulted, Sergio is looking septic. Orders more antibiotics.
3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well. Cultures are positive for a gram negative bacteria called Klebsiella. It is his arch nemesis. It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.
January 23rd. Sergio looks wonderful. He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed. We go home at 3:00 pm on two antibiotics.
3:30 pm I arrive home, he is shivering. I quickly find ways to justify the shivering and try to reassure myself that he is ok.
5:00 pm Sergio has a temp of 101.5. Take a deep breath, cry that it's all starting again just 2 hours after discharge. Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".
January 24th
12:05 am Phone rings. Sergio is spiking quickly and he is shaking violently again. Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.
12:30 am Sepsis protocol restated. The antibiotic stopped prior to discharge, restarted. Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one.
3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs. He is doing well and seems to be responding.
January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions. The attending physicians are convinced he has a clot. We head to CT scan to look. He looks off but nothing specific. CT all clear, just Sergio's body doing strange stuff without explanation as usual.
January 26th
9:00 am Sergio is not himself but he is no longer "sick". Very sleepy, but once up, plays hard and walks the halls. Has some respiratory stuff going on.
3:00 pm - Looks much better. Causing trouble, playing in the sink. Going home on two antibiotics again.
January 27th - Had a good night. Doesn't look like he feels well in the AM though. Run some errands, to return to Sergio running a fever.
11:00 am - Back in the ER for the third time in five days. This time, he isn't bouncing back. Several boluses giving. Spikes to 105.4. Given Tylenol. Cools down, looks a bit better. No room in the PICU so sent to regular floor.
3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future. He is moved to the PICU as a full PICU patient.
6:00 am - Sergio is now on maximum dopamine support to keep his pressures up. Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm. Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while. The fluid is catching up though and his lungs get "wet' and he struggles to breath.
3:00 pm - Finally go to surgery. Line removed. Return to room on high flow oxygen and real struggles to breath. Chest x-ray looks worse.
January 28th - Struggles to breath continue. Blood pressures are very, very high (170/110) due to fluid overload. Wean off of Dopamine to help bring B/P down. Give lasix to help pull some off. Needs several potassium infusions to keep it up. Give does of IVIG to help boost his immune system as it has crashed in response to this infection.
January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days. Breathing is better, but still needing O2. Develops awful cough. Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.
January 30th - Feeling better. Cough continues. Cultures are negative so we stop all antibiotics. Getting more potassium.
January 31st - Fever returns to 103.4. All antibiotics and steroids are restarted. More potassium.
February 1st - Flu A positive. Someone in the hospital gave him the flu. More potassium.
February 2nd - Cultures are neg. so we stop all antibiotics and steroids again. On Tamiflu for the flu. No longer needing any O2. Still getting potassium infusions daily.
February 3rd - Fever returns to 103.7. All antibiotics and steroids are restarted. Frustration abound for everyone. White count plummets. More potassium.
February 4th - Sergio is looking good. Playing, happy, more energy. Decision is to wait one more day and discharge on all antibiotics if still good. Increased Sergio's potassium in his hydration and TPN to maximum amounts. One more infusion.
February 5th. - Sergio GO'S HOME!!!
We are now over 5 days out from the completion of his antibiotics and thus far doing great. Praying all this is behind us.
This is a boring recount of what it's like for my sweet baby. He goes through so much just to live, be happy and play. He doesn't care how sick he "was" as long as he feels good again, he moves on. That's the reason I fight so hard for all of my kids. They WANT to live. So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.
More interesting posts to come soon.
Love,
Renee
I receive a call, Sergio has a fever. Off to the school I go, get him, draw labs, cultures, start antibiotics. He gets hotter and hotter. I give a dose of toradol and Tylenol. He finally cools down.
January 21st
3:00 am, my phone rings. Sergio is 103 degrees. I come to his room and find him shaking violently as he spikes one of his very high temps. His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids. His heart rate is in the 190's. I know he has a severe line infection (thanks to his usless gut).
4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105. I've already started everything needed for the sepsis protocol the ER uses. So we sit and wait for a room, while he cooks and I watch the monitor.
6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something. She orders a bolus of fluid. We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.
7:00 am the PICU doctor is consulted, Sergio is looking septic. Orders more antibiotics.
3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well. Cultures are positive for a gram negative bacteria called Klebsiella. It is his arch nemesis. It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.
January 23rd. Sergio looks wonderful. He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed. We go home at 3:00 pm on two antibiotics.
3:30 pm I arrive home, he is shivering. I quickly find ways to justify the shivering and try to reassure myself that he is ok.
5:00 pm Sergio has a temp of 101.5. Take a deep breath, cry that it's all starting again just 2 hours after discharge. Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".
January 24th
12:05 am Phone rings. Sergio is spiking quickly and he is shaking violently again. Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.
12:30 am Sepsis protocol restated. The antibiotic stopped prior to discharge, restarted. Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one.
3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs. He is doing well and seems to be responding.
January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions. The attending physicians are convinced he has a clot. We head to CT scan to look. He looks off but nothing specific. CT all clear, just Sergio's body doing strange stuff without explanation as usual.
January 26th
9:00 am Sergio is not himself but he is no longer "sick". Very sleepy, but once up, plays hard and walks the halls. Has some respiratory stuff going on.
3:00 pm - Looks much better. Causing trouble, playing in the sink. Going home on two antibiotics again.
January 27th - Had a good night. Doesn't look like he feels well in the AM though. Run some errands, to return to Sergio running a fever.
11:00 am - Back in the ER for the third time in five days. This time, he isn't bouncing back. Several boluses giving. Spikes to 105.4. Given Tylenol. Cools down, looks a bit better. No room in the PICU so sent to regular floor.
3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future. He is moved to the PICU as a full PICU patient.
6:00 am - Sergio is now on maximum dopamine support to keep his pressures up. Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm. Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while. The fluid is catching up though and his lungs get "wet' and he struggles to breath.
3:00 pm - Finally go to surgery. Line removed. Return to room on high flow oxygen and real struggles to breath. Chest x-ray looks worse.
January 28th - Struggles to breath continue. Blood pressures are very, very high (170/110) due to fluid overload. Wean off of Dopamine to help bring B/P down. Give lasix to help pull some off. Needs several potassium infusions to keep it up. Give does of IVIG to help boost his immune system as it has crashed in response to this infection.
January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days. Breathing is better, but still needing O2. Develops awful cough. Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.
January 30th - Feeling better. Cough continues. Cultures are negative so we stop all antibiotics. Getting more potassium.
January 31st - Fever returns to 103.4. All antibiotics and steroids are restarted. More potassium.
February 1st - Flu A positive. Someone in the hospital gave him the flu. More potassium.
February 2nd - Cultures are neg. so we stop all antibiotics and steroids again. On Tamiflu for the flu. No longer needing any O2. Still getting potassium infusions daily.
February 3rd - Fever returns to 103.7. All antibiotics and steroids are restarted. Frustration abound for everyone. White count plummets. More potassium.
February 4th - Sergio is looking good. Playing, happy, more energy. Decision is to wait one more day and discharge on all antibiotics if still good. Increased Sergio's potassium in his hydration and TPN to maximum amounts. One more infusion.
February 5th. - Sergio GO'S HOME!!!
We are now over 5 days out from the completion of his antibiotics and thus far doing great. Praying all this is behind us.
This is a boring recount of what it's like for my sweet baby. He goes through so much just to live, be happy and play. He doesn't care how sick he "was" as long as he feels good again, he moves on. That's the reason I fight so hard for all of my kids. They WANT to live. So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.
More interesting posts to come soon.
Love,
Renee
Long lost update. . . .
WOW!! It’s been a
long time since I’ve updated my blog. I’ve
been remiss in my duties keeping you up to date on the latest and greatest from
the Curkgang. I’m sure you’ve all be
waiting on baited breath for the daily going ons in our home and life (insert
eye roll). Actually, I’m pretty sure you could live the rest of
your lives having never seen another update from me, but heck, I’m going for it
anyway JUST in case someone out there can’t survive. I’d hate to be responsible for the early
demise of one of my faithful reader s (all 13 of you I think) J .
So what’s going on. . . . a lot and not much. I’ll start with our littlest one (in size
only, as his attitude MORE than makes up for that). He had a rough patch back in January with a
nasty three week admission, several trips to the PICU and eventually the loss
of another central line. That line was
replaced with a PICC (peripherally inserted central catheter) in his upper
bicep. Since that time, he’s had an amazing
run. There have been two fevers episodes
(scares) but both were successfully treated at home with our wonderful protocol
that allows me to do it all without going to the ER.
With this run of health, Sergio has successfully toilet
trained during the day!!! Not without
some interesting twists because that’s just Sergio. First, he’s discovered he’s now his own
producer of liquid (water) to play in!!
Wah Hoo!! Yesterday he was
playing in his bucket of water and it wasn’t quite as full as he wanted, soooo
he filled it up more, by letting loose a bladder full of highly dilute
urine. He had a devilish smile on his
face as he proudly looked at me solving his own problem. Needless to say, he’s not left unsupervised
for any length of time now.
On another Sergio front, he received the topper to his bed!!
Now he is safe and secure in his bed. He
had learned how to stack pillows and blankets to pull himself over the top of
his bed (which is level with my chin, thus high off the ground) and we were
terrified he was going to topple head first out of the bed. With some searching, I was able to secure a
couple of grants to cover the $2,000 enclosure.
These special needs companies make a killing on these much needed
products. So frustrating! But, he’s now
safe and sound.
Ok, onto Nettie who has big news to share too!! After her knee infection, 5 week hospital
stay and a major decrease in mobility due to the now scarred knee, Nettie’s
physical health has taken a hit. While
in high school, we choose a power chair for her. This was to help her stay in pace with her
peers, to be higher, thus more approachable, and to decrease the fatigue of
moving all over the large building using a manual chair. She had access to a school bus and ambulette
service to transport her in the power chair.
However, once she graduated, moving the chair from the house was impossible
(we do not have a van with a lift). The
new funding from Albany does not allow her to access the ambulette service
(wheelchair van taxi’s) if she has staff that can transport her. Obviously you’re never going to find staff
who own their own wheelchair adapted vehicle!
So, we requested a manual wheelchair.
It was flat out denied from the insurance. The one she has now (the one in many of her
pics) is a typical hospital wheelchair and it is causing severe back and neck
pain. She is now requiring bracing of
her neck and back to prevent further damage.
So, rather than take up a fight I was going to lose, we opted to take a
different approach. Annette’s card
business has allowed her to purchase several items to help her remain independent. She has purchased new braces for her ankles
(the ins. Only covers one pair every 2 years and she needed new ones at 18
months), shoes to go over the braces and has almost enough for a three wheeled
adaptive trike. We decided to start a
KickStarter campaign to try and promote her card business and raise the funds
she needed for her wheelchair! It was SUCCESSFUL!!!! She raised enough to purchase the wheelchair,
card making supplies and maybe a new computer to help her produce her labels
faster. She received a small Cricut
(scrapbooking machine) for Christmas two years ago, but has never had a
computer to use it with. She’s so
excited about the new things she can do with her cards with this machine and
computer!! We were blown away by the
support, but honestly, this child deserved it and I’m so happy she was
successful.
Joshua and many other Special Olympians were honored by the
Liverpool Lacrosse team. He wore one of
the players jerseys and were presented on the field! What an honor! Joshua is also going to the PROM!! I’m not sure with who yet, he doesn’t have a
date secured, but we’re working on that.
He’s very excited to go. This
mama’s heart is breaking and bursting at the same time. Such a passage of rite but, it signals a finite
time remaining for school before we must face the reality of adulthood. Joshua’s unique combination of needs will
preclude him from working independently. . . ever. He is not a highly motivated individual
(unlike Annette who, once she gets an idea in her head is unrelenting until she
achieves it). The future is just around
the corner now, but we’ll take it one milestone at a time.
Tray is doing phenomenal in school and in health. He has joined the track team and is doing
shotput and discus. He is enjoying it
tremendously. This summer we are looking for activities to keep him busy and
not glued to the computer games. He’s
not really ready to work yet (developmentally or maturity) but he’s close. I’m going to find some volunteer opportunities
to work on those skills needed for employment.
He’s also going to his heart camp this summer, though he ages out next
year! So hard to see my “babies” growing
up!!
Marriela is thrilled she is not attending summer school this
year. Though she qualifies, she made the
announcement that she will NOT be going because she is in middle school and no
longer needs to do baby things. Her
newest obsession is sextuplets. S
he is
determined that she is going to have said sextuplets (“either she will have
them by pushing them out or she will adopt sextuplets” – at least she’s
flexible in the methodology of obtaining this brood of children). With the concept of sextuplets comes the need
to locate and write down EVERYTHING that she may need for six babies at one
time. 6 seated strollers, Chevy Suburban
that can fight six children, six car seats, six sippy cups, six swings, six
white cribs, etc. etc. Ohhh, and she’s
moving to North Carolina. She’s going to
live in a house like Matty B has (a freaking giant mansion!) an indoor pool, a
hot tub and she will be contacting Mr. Congel to close Destiny Mall here in
Syracuse to open one instead in North Carolina.
Good luck with that my sweet girl.
he is
determined that she is going to have said sextuplets (“either she will have
them by pushing them out or she will adopt sextuplets” – at least she’s
flexible in the methodology of obtaining this brood of children). With the concept of sextuplets comes the need
to locate and write down EVERYTHING that she may need for six babies at one
time. 6 seated strollers, Chevy Suburban
that can fight six children, six car seats, six sippy cups, six swings, six
white cribs, etc. etc. Ohhh, and she’s
moving to North Carolina. She’s going to
live in a house like Matty B has (a freaking giant mansion!) an indoor pool, a
hot tub and she will be contacting Mr. Congel to close Destiny Mall here in
Syracuse to open one instead in North Carolina.
Good luck with that my sweet girl.
Cody is getting ready for another Jui Jitsu tournament right
here in Syracuse. He’s ready, just needs
to work on those double leg take downs and controlling the clock. He’s advanced so fast in this sport. He’s also doing intramural basketball in
school. Last night I took him to his
Spring Fling dance were I saw him dancing unabashed and in no less than TRIPLE
time of the song playing. He does everything
fast – including dancing apparently. I
even witnessed the only “worm” in the room, yes, it was my son in his white
shirt belly down on the cafeteria floor.
Ewwww. A mean round of Pokemon
card trading and the dance was over. It
is so wonderfully odd to have a “typically” developing child!
Peter is done with his courses and only has his internship
remaining. However, there is an issue
between his university and the State of New York and all students in NY must
delay their internships yet again (already delayed it one semester, now it will
be two). That leaves a quandary. To remain active in the program, he needs to
continue taking courses; however, he has completed all of the necessary courses
AND 12 extra credits. We are working
with the university now to see what compensation and alternative plans they
have to accommodate these students.
Peter has also successfully passed his hypnotherapy course and is now a licensed
hypnotherapist!! He is busy setting up his business model and securing an
office to begin servicing clients. So
proud of him!!!
Finally, the one and only, myself. I am finishing up two courses right now that
will finish next week. Then I start the
last of my two remaining courses. I’ll
be done at the end of August and will be conferred my Ed. S. degree in
Education. I too have started my own
business. As an ardent opponent of the
testing madness occurring in education today, and a local advocate for the
refusal movement (which, many of you may have seen, was highly successful in
NY) I have decided to open my own Education Advocacy practice. Education Advocacy of CNY will be up and
running by the end of May. I have
several families I’ve already been working with and know that this is a huge
area that needs to be addressed. I am so
excited to be done with school and putting my skills to work finally!! This will allow me to customize my schedule,
work from home or the office Peter uses and allows flexibility in my time to
meet all of the kids needs while still making an income. The best of all worlds!!
So, that’s where we are.
Could have totally lived without these 1700 words in your day I
suspect. Rest assured, it’ll be another
gap of time before my next update so you’ll have lots of time to recover.
Take Care and God Bless,
Renee
Friday, December 5, 2014
Messy Miracles in the Making. . .: Quality versus Quantity
Messy Miracles in the Making. . .: Quality versus Quantity: Quality versus quantity. . . what a complex and sticky little concept. It’s so different from case to case. We’re currently faced with ...
Wednesday, December 3, 2014
Quality versus Quantity
Quality versus quantity.
. . what a complex and sticky little concept.
It’s so different from case to case.
We’re currently faced with this issue for two of our children. It’s not the first time we’ve faced it, nor
the last, but is never easy. Sergio has many things going on that
constantly cause us to stop, rethink, and determine if what needs to be done is
worth the degradation of his quality of life.
Most times it is, sometimes, it’s not.
As such, the hospital has been wonderful in coming up with new protocols
never tried before just to save us from so many hospitalizations. From drawing cultures and labs at home, to
starting emergency interventions and key antibiotic therapy without the need
for a trip to the ER and admission to the hospital (provided he is stable and “ok”). We are also looking at Quality v. Quantity
issues for Joshua as well. His port has
stopped working, he needs a new one. He
is developmentally not able to do it while awake. We were incredibly blessed to have our
wonderful oncologist go down to interventional radiology and “make a case” for
him to get his port in IR under general anesthesia. We’re just awaiting a date. With the new port, we have decided to move
his IVIG infusions back home. He wants
to try it. This results in some
significant changes in who and how he has his port accessed. It also opens the door to trying new
interventions for his neurological issues that affect his bladder. This may allow us to circumvent the need for
more traditional approaches but will significantly impact quality versus
quantity.
Sergio
Well, we made it through
the holiday without an admission. That’s
not to say we made it without an infection, just that our new protocol that
allows me to begin the same treatment and lab work the ER and hospital do; at
home, worked. This prevented another 4
day admission when he began running a fever the day after Thanksgiving.
Sadly we’ve made several
more changes to accommodate our young son’s ever changing, and failing
organs. Lately it’s his kidneys. I’ve been watching his kidney numbers go up
more and more. His BP likewise has begun
a steady upward climb. The little boy
who had low blood pressure his whole life, now has high blood pressure. We know his kidneys are at fault, but don’t know
how or why. . . just like every other thing that goes wrong with him. There are no books that you can read, no websites
that condenses his particular constellation of issues into a nice neat article and
then delves into the treatment for those issues. Nope, not Sergio.
He is now tethered full
time to both hydration and TPN, this means he’s lugging around 6 pounds of
pumps, tubing and bags of life sustaining medications. We had to move him from a backpack to a
rolling bag (and if you know Sergio, this is not an easy feat!). Last night he had to have repeat doses of
morphine because his bottom was so sorry he wouldn’t sit down. It is a side effect of the severe diarrhea that
comes with the antibiotic he has to have.
So we augment his treatment with pain meds, acid reducing pastes on his
poor bottom and we blow dry the skin with a blow dryer. It’s a sight to behold. It’s sad, it’s frustrating and it’s
reality. Yet, my baby has NO IDEA that
this is bad. He has never known anything
else and when It’s over, it’s over. He
returns to his potato head stealing, microwave waving, water drenching
activities as if he hasn’t a care in the world.
He is in the terrible “twos” or “threes” phase right now. Complete with foot stomping, evil eyes,
yelling at and door slamming. It’s such
a spectacle you can’t help but laugh, which makes him madder if it results in
me quarantining him to his bedroom (mind you, this is the worst place in the
world for him, as it’s off of the kitchen and bathrrom . . . aka, microwave,
tub, sink, dog bowl heaven. And no,
morphine does NOT make him sleepy and all dopey, it just makes him feel well
enough to act just like himself. J
Joshua
Joshua has a neurogenic
bladder and bowel. This is a result of
the first surgery to remove his brain tumor.
It was significantly worsened by the epilepsy surgery that further
disturbed the areas that have the nerves that control the neurological aspects
of bladder and bowel control. As such,
he feels like he HAS to go all the time.
I mean 20+ times a day.
Sometimes, he actually goes. Most
times, he can’t. I get frustrated. He gets frustrated with me and doesn’t
understand why I get upset. You see, he
seizes the most in the bathroom. It’s
the least safest place in the house for him, yet it’s where he has to stand the
most. I has broken doors, showers, and
even a faucet. He has had the shower bar
fall on his head causing more issues and he has torn up his side and back up
falling against the door jamb and shower door latches. There are treatments but it necessitates
having to undergo invasive and very uncomfortable testing which he does not
want to go through again. It hurts and it’s always very abnormal. The permanent solution is a stoma in his
abdomen that he can use to catheterize himself so he empties his bladder
completely, thus eliminating the never ending sense of needing to go. This is where the quality versus quantity
comes in. We have opted instead to
pursue adding hydration via his port each week to improve actual bladder
function. Joshua is not happy about
having to have his port accessed for days at a time, but he also agreed it’s
better than the testing and if it works, then great. If it doesn’t, then we’ll revisit our
options. His original diagnosis of brain
tumor and subsequent treatments have taken a terrible toll on his body. He has unrelenting seizures, neurogenic
bladder and bowel, cataracts, severe developmental delays, severe hearing loss,
osteoporosis, and ADHD. Yet, he happily
sits by the fire every night and watches the same re-runs of Disney shows over
and over. He is Peter’s shadow and never
far from daddy when he’s home. Loves
having his finger and toe nails cut.
Manages to make it so his hearing aids “don’t work” an awful low despite
reassurances from the hearing aid store that they do, in fact, work well.
The rest are doing
well. Tray blew away his transplant team
when they saw how tall he had gotten. He
is now 5’10”. He’s officially taller
than me. He is still growing and will be
in a size 13 sneaker by winters end. He
has been having high blood pressure for a while now and finally the agreed It
was time to address it. So he’s started
a blood pressure med, though it doesn’t seem to really be a high enough dose,
as his pressures are still too high.
Will tweak the dose this week.
Overall, he looks amazing and feels even better.
Nettie has many aches and
pains. Her severe knee infection 2 years
ago, set her back almost 10 years in terms of physical abilities. In an effort to lose weight and get back some
of the function she has lost, she injured her elbow, causing severe tennis elbow. It’s very painful and though she had instant
relief from a cortisone shot, she did not follow instructions to rest the elbow
for at least 2 weeks. Instead, because
it felt good, she jumped into more exercise than ever. Now she’s hurting badly again. Not sure what else there is to do to help
her. L
Cody is doing great,
other than taking a very hard fall down our hard wood stairs today. Pretty bad back contusions and elbow bruise,
but he’s running around with my rain coat on and my hair dryer (a new and
better zombie killing gun says he). He’ll
live.
Marriela is in heaven as
her Elf on the Shelf, Dennis has returned.
For me, that means leaning heavily upon my night nurse to remember to
move that dang little guy around. Today I
was truly impressed, Dennis was in a hammock, hanging from my dining room
light. . . such ingenuity!
Peter and I are tying up
this semester of school. I am only 18
credits from my advance certificate of Ed.S (Education Specialist). Sergio is making it very hard for me to contemplate
what to do with my new found skills and education, but we’ll work something
out. Peter will be starting his
internship with Vera House, an organization that works with abused women and
children. He will be full time in the
spring and upon completion will be ready to work as a Mental Health
Counselor. So exciting!!
On December 16th,
I will be having surgery on my rotator cuff.
I have done the cortisone shots, PT, ice, and heat to no avail. I’m in pain all the time and MY quality of
life is severely impacted which then impacts my children and that is not
ok. As such, I will have an impingement
release, tendon repair and a bone spur removal.
I can’t wait!! How said is
that!! So Christmas should be fun. Working hard to have the buying and wrapping
well underway by that point!
Well, that’s it for
now. Merry Christmas to all and a
Blessed New Year.
Renee
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