Alexis and Jake

Alexis and Jake watch TV without hitting each other.

Hello everyone.  Well I have lots of updates for you.  First Alexis is doing very well, she is feeling much better and I think she is defiantly growing at an extraordinary rate.  She actually is thinning out and a lot of the puffiness is gone.  We are still trying to get her medications worked out.  It seems her potassium is always high.  I'm sure the doctors will work it out.  Her new Kidney is doing well and we are looking forward to heading home to Alaska on the 30/31 of this month.  It all depends on a biopsy that will be taken the week of the 24th.  If the biopsy turns out well we will be able to go.  Yahoo!!!!!

One really great thing is Alexis has started a program called Rehab without walls.  This is a program in which Occupational, Speech and Physical therapists come to the Hotel and work with Alexis.  It has been very exciting due to the fact that the physical therapist Hunter has given us a walking contraption that straps Alexis into the right position and enables her to walk without our help.  She took to it immediately and now we are having a hoot of time taking Alexis outside and down to the Lobby for walks around the Hotel.  You can already see the confidence and independence beaming from her little face.  She goes so fast; I'm hoping that this leads to her gaining strength in her little legs so that she can walk soon.  The therapists are hoping to get Alexis one of these things to go home with.

Dave still hasn't seen her walk yet but he's coming late Wednesday/Thursday morning.   I haven't told Alexis yet because I want her to wake up to her Daddy.  We are heading to Campbell River for the Canadian Thanksgiving this weekend.  Auntie Lorena will be preparing a giant dinner for the family.  We can't wait to spend a holiday as family.

Jake is growing exponentially.  I think he's the size of two year old.  He is starting to talk.  He says and excellent Helwo whenever anyone walks in the door.  Talk about a handful.  Jake is all over the place.  He loves trucks and cars so much that we could occupy him for hours outside looking at the street

Well that's about it for now.  I am going to attempt to down load some pictures to this site.  Wish me luck!!!

Love ,

Mama 

Well, first of all, I would like to apologize for not writing in a long time.  So Alexis was transplanted on the 27th of Aug.  We were discharged exactly two weeks after that and we went home from the hospital on a Wednesday.  The doctors sent us home with a boatload of medications.  That alone is pretty overwhelming.  We were all just trying to get it straight.  Alexis was trying to tolerate all the medications and the new feeding regime that was increased by over 1/3.  We had a rough week in the Hotel.  Further Alexis just never seemed to get better.  What I mean is she seemed Blah.........She finally had a couple of terrible nights and I knew something was wrong so I called the Renal folks and of course they wanted blood and to see her.  I brought her in and she was admitted on Monday 15 Sept for low 02 saturations.  After an X-ray it was found that her lungs were pretty wet and she needed to be on oxygen.

We are being discharged tomorrow, Saturday with a clean bill of health.  We also are loaded down with oxygen monitoring equipment from the hospital.  I didn't think we could fit any more into our hotel room.

The kidney folks seem to think that maybe she is getting more fluid than she can handle at home.  They have adjusted her fluid intake to something she can tolerate.  The other doctors have done everything they can think of to diagnose some kind of virus or bacteria but they cannot find one.  Leave to Alexis to once again stump the doctors.  

She's starting to have a lot more energy in the hospital but she is bored.  I can't wait to get her somewhere we can all play with her.'

Maria and Molly are doing well.  Maria and Jake have gotten a cold and Molly just arrived from Buffalo after attending my Uncle Tom's wake.  We are so glad to have her back.  Maria and I need a good sleep.

Jake has not been sleeping so I took him to the Doctor when he started sneezing a bunch of mucous.  The pediatrician told me that not only did he have a small cold but also 4 molars were erupting at the same time, not to mention the 4 teeth 2 on each side, which just broke the surface.  Poor Boy.  I feel bad for not giving him some Tylenol the other night

Anyway live an learn...  I hope tomorrow will be great!

Take Care,

Barb 

Alexis is doing really well today.  She looks great and is sitting up coloring, talking, playing with her toys and balloons.

Yesterday she had a nice visit from a beautiful golden retriever and also from Aunty Molly who arrived safely (and on time...yahoo...no big delays in Chicago).

Her creatinine was 0.6 today...which is awesome and we are starting to get her weened off ATG and onto a much less severe immuno-suppressant called Tacrolimus.

This Tuesday, there is a plan to remove the "stent" they installed temporarily between her kidney and bladder during her transplant to ensure things were draining properly.  This stent is a site for bacteria to accumulate and they want to get it out as soon as possible.  This will help with her current bladder infection.  Wednesday morning they will do the swallowing study planned originally for 16Sep08 and then we will likely be discharged from the hospital.

Barb and the kids will stay with Aunty Molly and Maria (Gulenko) at the Nexus probably until the end of Oct'08 because the Nephrogists need to do weekly tests to ensure her new kidney is working properly and the immuno-suppressants are minimized for home maintenance.

On a sad note...our Uncle Tom (O'connor) is very ill and in hospital in Syracuse.  Please rally the prayer troops and see if we can pull another miracle out of the Big Guy!

Luv to All!

The Flynns....

Well...I'm learning how to use this site!

 I don't know yet if a Blog is the same as a Journal entry...but hopefully everyone can get to read this.

 Alexis is doing well again today.  Her creatinine was down to 0.9 I think today.  This is extraordinary for her and much to her mother's credit for giving her a good kidney.

 The docs are keeping close tabs on her and while she has a bladder infection...we are continuing to move towards discharge.

She had her first bath today in over a weeks and had some occupational therapy time today as well...which got her out of her bed.

Tomorrow she is scheduled for an upper airway (GI tract) study and will be undergoing another swallowing study on 16Sept08.

Hope this finds everyone well!

Bye for now...

David

907-440-9421cell

PS. I took Jake for a swim today in the outdoor pool at the Nexus.  The weather is beautiful and should hold for a couple more days!

Hello

Well, we finally have a date.  The transplant will be on August 27th.  I have made arrangements to arrive in Seattle on the 24th of August as we will have lots of Pre-operative tests starting on Monday the 25th.

Alexis is ready, she has never been healthier than she is right now.  Her O2 Saturations have never been better, We've grown an inch, and we even emptied our own bladder a couple times this week.  Amazing.  Pretty soon we'll be walking.

Wish us luck on making all the arrangements.  Things are pretty booked in Seattle during the summer.

Take Care,

Will Blog Soon,

Mama

We are anxious  to get our transplant date.  I spoke with the Transplant coordinators this week and they said they were having problems coordinating the donor operation with the Transplant operation.  I hope that they schedule soon.

In the meantime, Alexis is doing great.  We haven't gained any weight but we've grown an inch.  That's a huge thing for Alexis.  She has started talking finally and it's so cute.  She repeats everything.  We have been going outside alot now that it's summer.  Alexis loves the flowers and fresh air.  It can be a long winter in Alaska.

I'll keep you all updated.

Take Care,

Mama

Thanks to everyone in Buffalo for a great fundraiser.  They had a spaghetti dinner with a Band and Auction.  They raised over 12,000 in one night.  Thanks again to Marcie, Molly, Mom, Dad, Auntie Barb and everyone else who helped out.    Your all Great!!!!

Love Barb

Well, I haven't had a chance to update the journal in a long time but Alexis is doing very well since the horrible stay in Seattle.  She has regained all her strength and is so cute.  Since the Seattle visit she has endured one more procedure.  Here bladder kept getting colonized with pseudomonas bacteria and she had to have her stent removed.  We did this at the end of May.  We also had some Chest X-rays completed for the pulmonary department in Seattle.  Pulmonary is currently holding up Transplant until her lungs are cleared.  I have not heard from Seattle in Two weeks.  They keep saying they will speak with the Surgeons and plan a date, but they never call me back.  I guess we should consider this a good thing.  Maybe they have sicker kids that need to be done first.  I worry that one day Alexis's small little kidney will just call it quits, and we will have to rush to the hospital and start dialysis.  We really want her to make it to transplant without Dialysis.That all being said, she is such a good girl.  We came home with yet another machine called a Bi-Pap.   This is a breathing machine that helps her Trachea stay open at night.  At first I didn't make her wear it, then I talked to my friend Nicole whose son uses one and she said it was great.  I started her that night and it was great.  She woke up smiling and with loads of energy.  I had never seen her heart-rate so low at night.  It was actually normal and her heart was doing much less work to achieve REM sleep.  Apparently this was something that Alexis really couldn't achieve without the help of O2 or Bipap.  Well she wore the thing for about 3 weeks straight before she started to not tolerate it anymore.  It's a battle but we are still trying.Besides all that Alexis is talking up a storm and is just so smart.  She plays her Mom and Dad all the time.  We just love her so much.

Well that's all for now

Barb

Just a note to update everyone...

 Alexis was brought to Seattle on 20Apr08 for a day surgery...adnoid and tonsil removal.

In recovery from the surgery...her airway closed up and an emergency team was brought in to get her breathing again.  Aunty Monica was there with Barb to help out and eventually Alexis was taken to the PICU (Pediatrics Intensive Care Unit).

Alexis' fragility wasn't properly assessed and she was moved too quickly from PICU to the General Recovery ward.  She developed several infections while there (trachiaitis, kidney infection, bladder infection with some new strain of stomach bacteria, etc.).  She got very sick, very quickly.

Barb begged and pleaded all day on the 23rd (Apr'08) to have her re-admitted to the PICU...but wasn't taken seriously about her concerns.  After Barb left to get some rest, Alexis got gravely ill again, was re-intubated, and was transfered back to the PICU.

There, for over a week, she was considered the sickest child in the PICU.  We were very scared but were hopeful she'd rally.

After this initial week...she start showing enough improvement with her breathing that they planned to wean her off the ventilator...unfortunately...her bowels impacted and she bloated up like a beach ball with gas.

We spent three long, uncomfortable days trying to help Alexis move the stool through and get rid of the gas.  Mommy was there to witness the pressure release event and everyone cheered for Alexis.

The next day (2May08)...she was extabated and is recoverying well now.

They are planning on removing her kidney-to-bladder "stent" on Monday as they believe it is allowing too much colonization of bacteria in her renal tract...leading to infection and fevers.

We are hoping by Wednesday or Thursday that she might be well enough to travel back to Alaska.

Sorry for not getting an update into the system sooner and unfortunately we can't get pictures onto this site until we return to Alaska where our camera adapter chord currently is.

Thanks to Joel and Lorena for coming down to offer comfort, entertainment, and comedy relief last weekend when things were looking pretty gloomy!

Thanks also for the thoughts and prayers...our little girl wouldn't be here without them...

 Xxoxo

Barb & Dave

907-590-1970 / 907-440-9421 cells (have to be turned off in PICU)

rm 311 / Quality Inn - Aurora Ave downtown Seattle (206-728-7666)

Rm 4142 PICU (206-987-2000)