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

Day 1 after surgery

We made it through the first night and into the first day of a new chapter in our lives. Al is working on getting the bladder doing it's thing, and Jack is too. Al has had an issue or two with the catheter, but that seems to be working itself out.

Jack's creatinine level is 0.17. This is a broad measure of his kidney function. To put it in perspective, normal levels are less than 0.5, and Jack has never had less than 1.7 and it's more likely that it was at 2.5-3.5. The 0.17 shows excellent kidney function. It's early, but that is promising. Jack's cheeks are Rosy and he is currently enjoying 101 Dalmatians which I think he prefers over his pain meds...

We are hoping to get Al to hop up and walk around and get a visit from Sam today.

Resting Well....

6:00 PM and everyone is resting well. Al is awake and chatting. Jack is stable, breathing on his own and producing urine well. We should get Al up and moving tomorrow. Jack should be more conscious by then too. Pictures tomorrow.

Jack's done!!

Jack is piped in being sown up. Things went very well. We should be able to see him in about an hour. Thanks for all the prayers and thoughts, they worked!!

Al is done and they are hooking up the pipes to Jack

12:00...Dr. Said things went extremely well for Al, we should be able to see her by 1:30 or so. Jack is getting hooked up.

Kidney in transit

10:51....they have removed Al's Kidney and Jack is prepped for it....

Al and Jack are in @8:00 AM

Su Su (Al's Mom) Grandpa Bob (Al's Dad) and I saw Al and Jack off to surgery @ about 8:00AM. Sam is taking care of Grandpa Jim (Al's Step-Dad) back on the home front, and Uncle Tim (my bro) has been in town and will be over this PM to support his big brother. Tough day and a half thus far; having two family members in surgery at the same time. I took Jack into the Surgery room and I was clearly more nervous than he was. During prep prior to the surgery room, Jack was running all over the ward showing everyone his "sweet jammies" (his term) and chatting with the Docs. Al was next door getting prepped. That let us hang out together for an hour before it all started. She got her pre- anethestesia there, were Jack was sober as a Judge until the surgery room. Al was clearly dismayed with the choice of wardrobe they gave her. She also got the white compression stockings, which actually looked pretty good on her. The booties, which help for circulation for her legs, did nothing for her, though. We kept things pretty light until Al headed in, which brought a bit more reality to the situation.

I’ll post another blog when we get some news…..

Mr. Happy