Aligning with what the world offers to us

Victory - we are potty trained!

Here's a link to my bro-in law's own blog... which is geared for the midwest fly-fisherman, BUT his most recent post on 12/3 contains the most heart-warming story about Jack that also reminds me about the gift contained in each moment. I also understand now why jack answered with "FISH" when the teacher at preschool asked what he was grateful for last month.

Jack is doing really well. He's busy casting webs like spiderman and opening the chocolate in his advent calendar. He and Sam had a fist fight over who saw Santa out which window in the car this morning. So, all in all I have to say things are 'normal' around here. We have our next visit to the kidney doc at the end of the month.

Sadly, we had to say goodbye to our home care nurse this morning. Our insurance changed with Harry's new job and as a result this service is no longer provided. We had VERY tearful goodbye this morning and hope to have a new plan in place soon. We still need to have biweekly labs and an assessment for Jack. So, I trust in the grand plan but hope that we can rebuild a new relationship in a clinic where Jack feels safe. (I'm not jazzed about hauling both boys out in the snow and sitting in a clinic with a child that is immuno-suppressed all before 8am). His blood draws are complicated as his veins are so small. This morning it took 3 venal punctures, strong arms, lots of yogic breathing, and finally a finger poke to get the job done. Thank GOD for spiderman band-aids and for our amazing nurse Lynn.

And yet, .... we remain humbled and grateful for today, for fish, for uncle jeff's unwaivering support around here.

Some pics...

on a hunt for a xmas tree in st. croix valley with uncle chad and pop

superciliousness

Cherry Margaritas

Two weary parents in celebration of 7 years of marital bliss escape to Door County, WI and sip cherry margaritas in 40 degree temps watching the sun set on the horizon. Woo HOO!

Meanwhile, back at the ranch... Sue Sue and Pop take over the Certain household and pharmacy. Chocolate milkshakes and googly eyes noted below.

A visit to the Orchard for donuts + blue sky.

And here's some pics from the archives of September. It was a really full month. The boys turned 3! (holy batman) We had visits from the Grandpa Bob and our dear friend Kellie who is an amazing photographer.The first few pics were taken by Kellie...


The boys working on handstands during the debate!

A mother's love (batman cake) or insanity.

oh... and by the way, the cherry margaritas were over-the-top fantastic. Seriously. Thanks mom + jim, uncle jeff, our nanny christie, and grace for allowing us to slip away, sleep, and play. Thanks dad for running to the store at the last minute when I realized I didn't have black food coloring for that damn (whoops) birthday cake! And thanks to all to continue to be entertained by our adventures.

OH.... and most of all.... Jack is great! If it is any indication that I nearly forgot to mention his health in this post, let it be known he is super fantastic. We continue to have home visits from our nurse and watch his labs each week.

Much Love,
Ali

First Day of School!

The boys above are happily modeling their backpacks in preparation for school! We only had a few heated arguments over who would get to have the blue one. 

The last month for Jack has been the best ever. I'm still in awe when I see his cheeks every morning without the tube and tape attached.  The meds have been going well although a degree in child psych would serve me at sometimes. For Jack, the need to be in control and have choices in this process is important. 

Jack's labs indicated yesterday he might be preparing to fight his first cold or infection. (White blood cells and other lab results were extremely low). The nurse indicated his 'first line of defense' is very weak so we have to be very cautious and protective right now. My hope is that he can have the strength to fight through this and stay in preschool as he LOVES it already. We'll learn as time unfolds. 

The boys turn 3 on Sunday.  Of course, we're having blue cake. That should be a good pic for the next blog update. 

Stay tuned.... 

Ali

 

FREE!

The feeding tube is out!  Applesauce + meds + courage + trust + patience was all it took.    

 

Summer

A full month has passed since my last post. (Those of you with blog addiction are surely aware of that.)  So, Jack continues to make great strides. The last month has been very steady and it is truly amazing to see my kidney in action in his body. His muscle tone is significantly greater, he can jump, talk back (thanks again to steroids), and could potentially win a hot dog eating contest for toddlers.

His only medical intervention in the last 30 days has been from our home nurse who has come 3 x's a week to draw blood and change the dressing on his central line. (The central line is high maintenance and often the culprit for an infection but the advantage is that Jack doesn't feel a thing when the nurse draws blood). Since his labs have been so consistent and very favorable we are removing the central line this Friday which is a big milestone! Of course, the downside is that he will have a venal puncture 1 x per week which will dramatically change his relationship with his home care nurse. It's a quick poke to draw blood and Jack is a tough patient because he his veins are very small. Overall, very good news that lab frequency is spreading out and the the central line is coming out. The first thing we will do to celebrate is take a bath and go to the swimming pool (both of which are restricted with a line).

We are currently planning an exit strategy for the feeding tube that Jack has managed to keep in since December '07. He is interested in foods but not so interested in liquids. The kidney requires a certain amount of hydration (+25 oz / day) so the feeding tube acts as an insurance

 policy to keep him hydrated as well as administer his meds. We are working with a nutritionist for support and hope to be down with this by September assuming he will take his meds orally. It is not uncommon for us to wake up 3-4 x's an evening to deal with a feeding tube related issue (i.e. kink in the line, tube has come out, leaked, or the pump is finished and the alarm needs to be turned off). This is by far our biggest stress and frustration right now. I remind myself how far we've come thus far and that I'm not the one with the tube in my nose and throat. 

Sam + Harry+ Jack+ Gpa Joe

(yes, those are my salad spinners)

The Tide Turns

Sam makes the headline this week:  on the 'injured' list with high fevers, covered with cold washcloths and a rash. "Everything hurts and I need a special treat" -  Sammy 11pm.

Meanwhile, Jack had a fabulous week!  Harry pointed out to me that I wasn't really acknowledging this fact when people would ask. Cautiously optimistic, I would say "he's pretty good" when in reality he's never been better.  I suppose I was just too afraid to admit it, in fear that it wouldn't last. Then again,... the only constant is change. 

The kidney biopsy did not happen last week as his labs steadily improved (although still a work in progress) and his blood pressure has stabilized. The fevers have been banished! In his radically apparent new experience of freedom, confidence, and health he is an official wild man - running his mouth 24/7 , growing hair in odd places (thanks to steroids), and recklessly practicing his baseball swing.  OH... and eating like a truck driver.  (I thought the day would never come!)

 

Embrace the Mystery

After 6 very long days, we are happily back home again. Phew!  The docs have exhausted what feels like every possible scenario and completed an enormity of testing this week and continue to come up empty. This is good news and yet the uncertainty is unsettling. My yoga teacher always speak about 'embracing the mystery' and this most definitely is a courageous act and one that requires great faith.

The creatinine levels continue to bounce around so it is possible that we may do a biopsy next week on the kidney to rule out rejection. 'Bouncing around' is common with kids because they metabolize much quicker than adults. Time of day, hydration levels, drug interactions can all be factors in this. If rejection is happening they will treat it first with additional immuno-suppressive drugs. However, we need to ensure there is no viral or bacterial infection first as this would put Jack in a comprising situation. If his labs on Friday morning are stable then we'll continue to move forward ("proceed with confidence" as my mom says).

Jack and Sam are happy to reunite. They pretend as if they don't miss each other while they are away and then they act like flirty, shy teenagers when they see each other again. It's quite cute until someone gets whacked for hoarding a toy.  

Thanks to dear friends and family once again for keeping our momentum going.   

May all rest well tonight in the darkness. 

Bold move here... I have not had a cup of coffee yet. Anyone who knows me can confirm this is a risky venture....

quick update: the renal team met yesterday and all except for one of them agreed that a biopsy of Jack's kidney was not necessary at this point! (I know... you are wondering how many made up that team of docs and I'm not sure). A biopsy is done when they are concerned about rejection. In general, they feel confident my kidney is doing its job. (makin' me proud).

There is a very small area on Jack's lunge that is possibly the culprit.  It shows up a pocket of air or maybe even a small collapse of the lunge on xray and his CT scan. At 8am today they will be doing a little procedure in which a small microscope will be sent down his throat so they can take pictures and possibly swab the area to see if there is a small infection. His feeding tube could also be the culprit. Jack has had this since early Dec of '07 which is a very long time. (Most kids have these pulled off their faces in a week). So, they will take a picture of him swallowing and see if he is aspirating into the lunges because of the feeding tube.  Both of the tests today are fairly quick, easy and non-invasive. Jack will be sedated for the first one and quite possibly still snoozy for the 2nd one.  I suspect will get results quick.  If it is a small infection, they will treat it with antibiotics and possibly try to clear the area in his lunges. Sometimes they can actually lift up the area that is collapsed with the scope. 

It also may turn out to be nothing... just unexplained fevers which they have seen before with kids post-transplant. That would be fantastic and unsettling at the same time. 

Must get coffee and then sadly, take Nana to the airport.

(disclaimer: no coffee and this is second-hand info from Harry and his mother as I was not around when the docs visited Jack yesterday. Just like in the game of telephone, things get a little lost in translation. The scoop is accurate... the medical terminology... maybe not so much).

Superdads make Superheros

This pic was taken last week when life had somewhat resumed to normalcy.... boys wearing capes and masks,  hiding out in the forest (the closet) and all of us gaining more rest.  Nana (Harry's mother), although she is not adorned in her superhero costume, has clearly demonstrated her own physical prowess and stamina since arriving on June 4th.  A woman who raised 4 boys doesn't sit on the sidelines and watch! She has been mowing the lawn, weeding, strolling with Sam to the park, fishing off the front porch, laundry, cooking, and engaging the boys in lots of play. 

Jack has been back in the hospital since Thursday because of high fevers, slightly elevated creatinine levels, and signs of a virus or bacterial infection.  Lab work and blood cultures are not revealing much so we are all a little confused, frustrated, and anxious for answers.  Our hope is that this is viral but the possibility of rejection is always in the back of the doc's head.  I presume we'll be here at the hospital until we gain some answers over the next few days.   A CT scan has been scheduled for later today or tomorrow. We made one attempt to do this already but Jack was not sedated and for obvious reasons it did not go smoothly.

Sam is hanging tight, patient as ever.  He is definitely starting to understand the routine and different energy around the house when Jack gets ill. Coincidentally, he'll need medicine and decide that his leg hurts. I remind him his new big wheel can't be driven if his leg hurts and we have a miraculous healing. 

 

Harry is doing well -- steadfast, unwaivering in his strength and trust.  Sam and I brought him breakfast in bed today for dad's day (a fancy bowl of cheerios and OJ).  He's seems to emulate the shape-shifting sort of superhero (think Plastic Man) who can transform himself depending on the situation at hand.... marketing/chemist guru, baseball coach, doctor, carpenter, pharmacist, outdoorsman, champion coffee drinker and occasional napper. I'm proud of him and look forward to the days when these boys are old enough to appreciate how extraordinary he is.  

I'm back to teaching yoga and back to handstands (hooray)! Backbends to follow this week??!?

Thanks for all the continued thoughts and prayers. More updates this week as we learn more.

xoxo,

Ali

(scootin' around the hospital on Saturday night on a tandem tricycle... stirring up some trouble and laughter)

Xmas in June!?

Jack is back home from the hospital (hooray!), Nana (Harry's mom) comes on Wednesday for 11 days (hooray!),  AND we had a lovely ice storm last night. I hope my plants are as resilient and courageous as our boy Jack is.

Today is the day

The last week has been energizing for us all watching Jack regain strength and exuberance. We're definitely improving in the sleep department but not quite on track yet. We have a few interruptions each night (feeding pump issue, achy belly, monster sightings, missing blankets, etc. ) but it has significantly improved!  We've been enjoying a few bike rides, had our first fishing outing, and jumped on almost every opportunity to have fun with friends (and sporting equipment). 

Jack woke today with a high fever and once again his labs indicated low sodium levels. So, Jack and dad are back in the hospital.  I'm grateful we've indulged in life as fully as we have this last week 

as you never know what tomorrow will bring. 

 

Enjoy everything. 

Much love,  Ali

Jack is Back!

Back home.... AGAIN!   Yay! 

go with the flow

Together we are finding our new way around here. Life is full! We're trying to keep up with Jack's new routine of medications, blood pressure checks, weight checks, and 3 weekly visits from a home nurse to draw blood for lab work. Harry has crazy excel spreadsheets going to keep us organized and I have my cell phone alarm programed to go off 5 x's a day to administer Jack's meds. It's comical and yet overwhelming. Jack is slowly getting his feet moving forward and very interested in new foods. WOW!Hooray! Our biggest challenge right now is sleep. For some reason, this is when Jack is most uncomfortable. We're trying to determine if it is the feeding pump, medication, or simply the interruption of his own rhythm after being in the hospital environment for 2 weeks. I trust this will subside as Jack regains comfort and some of the meds taper off. 

Unfortunately, Jack had to go back into the hospital last night as his lab results yesterday indicated low sodium levels and a few other less than desirable lab results. We were told to expect this occasionally the first year until we get the medication levels optimal and regulated. Of course, you can never be prepared for this even though we know it to be true. So, we dragged our heels for 5 minutes and then quickly pulled it together for hopefully just an overnight until his blood levels improve. 

So, in true yogic fashion we are trying to go WITH the flow of life instead of resist it. Even though Jack is back in the hospital, I could hear him on the phone this morning laughing in the background and keeping smiles on the faces around him.

back to our nest

Lunch on the porch with dinosaurs

the great escape (Thursday night)

moving off the 5th floor - finally.

welcome home Jack!

sorting through Jacks meds + sipping champagne 

 And, so it begins the first day of our new lives. More to follow...

An expression of capacity

I've been bargaining and reasoning with my mom and husband on all the reasons why it would be OK to do a headstand despite orders to wait 6 weeks. My mom is putting her energy into a daily, ferocious, and unsuccessful battle against the ants in the house.  Meanwhile, Harry is building a strong case to persuade the medical staff  to let Jack come home.  So, since I can't do my yoga practice I  looked up the word 'patience' in the dictionary as I felt we needed a reminder...

 pa*tience noun :the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. Hmmm... clearly this is a test of our capacity.  I trust that everything prior to this point has prepared us for this moment. Occasionally, we just need to get utterly frustrated and then remember how deeply equipped we are and that we have the capacity, strength, and patience to wait a little while longer. 

Fortunately, Jack is doing much better. The rash and fever mysteriously disappeared without a full understanding of the root cause. Apparently, this is not too uncommon after transplant with all the meds he is on and being immuno-suppressed but as long as it goes away they don't get too concerned.   He is pretty wiped out after 2 days of Benadryl and a fever so we are working to rebuild his strength and stamina. He's a little nervous to stand on his own two feet but such a simple act even for us 'grown-ups'  can be hard at times. 

Jack's blood pressure it a touch high which earned him another night on the 5th floor. Argh! (One more night for Harry to polish up on his lines of  the movie "Chicken Little").  Again, not uncommon after transplant but something they want stabilized before he comes home.  Jack's bag is packed and dad has one foot out the door already. We hope tomorrow will be the day. 

patience

Patiently we wait for drug levels to be optimal and Jack's recent rash and fever to dissolve. It appears he may be allergic to one of his anti-viral meds or possibly an avocado that he ate on Saturday evening. (Afer 36 hrs. we now think the meds are the culprit). The fever and rash are being treated with Benadryl which makes for a very sleepy boy. So, we're hoping to crack the case today and get back on track for discharge. I'm guessing we have a few more days here as he needs to be totally stable before departing home. 

Here's a few pics from Saturday night. The crime scene: family happily eating and drinking after-hours in the children's library (no food + beverages allowed) desperately seeking some solitude. Jack delightfully ate 1/2 an avocado and took his first steps since surgery. It was a great night!

Sam guilty of diving into the brownie pan. 

one week later...

We're hoping Jack is home by Mother's Day - the perfect gift! His ticket home is reaching a high enough level of the anti-rejection drug in his blood.  It is constantly a moving target and will be closely monitored (3 x's a week) after discharge.  He is doing really well. His smile somehow grows bigger each day while his belly slowly gets smaller. I am moving around much better and anxious for the pockets of air in my belly and under my diaphragm to dissolve. This has been an unexpected discomfort far beyond the surgical pains.  Sam is excellent and has adapted incredibly well to the frequent hospital visits,  house guests, and going to sleep without his buddy. Grandma Sue-Sue (aka - wonder woman) is wearing many different hats around here and her stamina is unbelievable.  Both 'Pops' have returned back home and most surely are exhausted. Harry has his feet up at home tonight while Uncle Jeff is with Jack.  Lucky are we. 

Keeping morale high with some entertainment.

A very liberating wagon ride around the 5th floor.

Cheers!  Why not?!

a new day

I (Ali) am back! Jack is out of ICU and into a room with a beautiful view. We are both moving forward with our healing and even more grateful for the little things we take for granted: sun on our face, familiar faces, food, a deep breath. Meanwhile, Sam and Pop are holding down the fort at home. I don't think my step-dad has ever been so domesticated in his life - laundry, dishes, diapers, etc. As my step-dad (pop) says "god must have a sense of humor" because now he is the only one allowed to change Sam's dirty diapers. Totally fine by me!

So, Jack was able to sit on mom + dad's lap yesterday and even indulging in some hospital delicacies. I almost tipped over when they delivered a cheeseburger, tator tots, canned green beans, and chocolate chip cookies to him in ICU. A sweet and generous offer but a little overzealous. A feeding tube has been placed back in his nose (which we are familiar with) and the plan will be to ween him off this slowly and get him on solids. He is definitely showing interest and even had a pizza ordered to his bed to share with Uncle Tim & Jeff last night.

Jack's progress is excellent. They are wrestling with a few issues all of which are expected after transplant and manageable. In general, the main goal at this point is to get the anti-rejection drug he is receiving to the appropriate level before he can be discharged which is as early as FRIDAY! Unbelievable. Wow.

There are no words to capture how very grateful we are to all of you for following and supporting us through this. Your emails on the blog have given every member of the family a huge lift. Massive hugs and love to the Anusara community, locally and to the kula gathering in Denver this week. Your meals and prayers are so heartfelt. Grandpa Bob (aka: pop) - thank you for sitting by my bed in that ridiculously uncomfortable rocking chair all night long and for being dedicated to service (a true yogi). Thanks to Jeff who slept overnight with Jack last night so Harry could come home to his own bed and Sam. Thanks to Uncle Tim for getting Jack to eat food and laugh. To our mpls friends... you guys rock. We can't wait for the kegger! To my girls (you know who you are) - thank you for staying so close and for the beautiful gift. Laurel - thank you for driving my mom to pick up food at my favorite restaurant even though I don't remember eating it. Mom + Jim... I can't even go here with you yet. Just stick around for a few more days... please. And.. thanks to Jackie + Joe (harry's folks) who so clearly have raised the most unbelieveably patient, strong, loving, husband, father, and friend anyone could ever ask for. Thank you all.

Keep your prayers and thoughts flowing. We still have a long road ahead but the sun is shining on it.

We love you all,

Ali

Day 3

Big happenings for the Certains: Al is home from the hospital and back with Sam. Jack has made great strides and is more communicative. We are starting to get him back on the feeding tube where he was before the surgery. The hope here is to get him nutrients and his meds (and there will be a ton of them) and food in the short term through the tube. Then, we can start to move him over to solid food as he (hopefully) gains interest.

If anyone would like a review of the meds, please ask Al...we were in "class" today learning about them. Al was wacked out on pain meds and I am pretty sure she was halucinating and thought it was a knitting class.

A few more picts...
Jack "tubeless" for a few moments..


Dad and Jack "hangin' out"

Day 2

Al is up and moving quite a bit, but suffering an exceptionally distended belly (she appears about 5 months pregnant) from her lower GI not moving properly, and air that is trapped below her diaphragm that got in there from the laproscopic surgery. When they do the surgery this way, they blow air into your abdomen to get a better look around. They do attempt to pull the air out, but some can get trapped and push on your diaphragm. Needless to say, she is uncomfortable. Hopefully, this will start to clear on Monday.

Jack was really alert today and chatting with us. His kidney is flushing, but needs some stimulation to do so. This is normal, and hopefully the kidney will kick in on its own in a few days. As he gets more awake, he is getting more uncomfortable and frustrated. He said "I want to go home" at least 5 times today. Steady improvement, but we have a good size journey in front of us.

Here are a few photos



Jack Just before surgery
















Al enjoying an eye-bag moment, post surgery