Busy Busy Busy

Looks like we kicked Cdiff to the curb!  Can I get a big HOORAY?!  That was horrible.  Owen had labs twice this week and his levels have been all over the place.. from INR, to anti rejection drug levels, and creatinine.  I'm hoping his levels from today are a little more stable.  Life at home is perfect.. busy, but wonderful. 

 

Owen still hasn't started school.  I submitted paperwork weeks ago to get homebound started and gave the school a heads up to start the process in mid August.  Their two week fall break starts today.. so I guess no school for another two weeks at least.  Aye yi.  Owen isn't complaining. 

We had transplant clinic at PCH yesterday and our morning was a hot mess.  I usually have it all together.. yesterday was just a mad joke.  I forgot to feed the boys, we were running super late, I had to stop for gas in Tempe.  Logi puked up a ton of curdled milk all over the place (so stinky) and the only day I didn't pack a change of clothes.  We were 20 minutes late, but we made it.  The boys hit up the front desk for Dum Dums for breakfast and I bought an oversized t-shirt in the hospital gift shop so my baby wouldn't be ghetto naked.  Owen's clinic went well, he's slowly gaining some of his lost weight back.  His BNP (heart failure) is increasing .. it was 2300 at discharge in August, and it was 7000 on Monday (norm is under 100).  We mostly just trend the number so we'll watch him closely. 

I'm still car shopping for Kam and there just isn't enough time in the day.  She will have a car soon.. cross your fingers we find something this weekend.  This weekend is also going to be a study weekend because Kam has to be ready for PSATs coming up.  I just remembered we have to go shopping for Homecoming dresses. We are also house hunting so I keep praying the right house will just pop up and we'll know it's right.  Life is crazy.  Also knowing that a call could come at anytime... eek!

I'm so happy that we are all home together and life is keeping our minds off of the medical stuff.  We have a few friends still living at LPCH waiting for surgery, waiting for a heart, waiting for a kidney... I am just so grateful that Owen is stable enough to be home.  Owen is so excited that tomorrow is October 1st.  We are headed to the dollar store to get some Halloween stuff to "craft" and I am not crafty at all. Owen was scanning through Pinterest while waiting for labs this morning and found "some super creepy crafts."  Thank goodness Kam isn't too busy right? :)

My heart is full!!  Can't believe it's almost October.. my favorite three months of the year!!

Admitted

Owen spent the week on the couch or in the restroom. He has been miserable! I stayed on top of things the first of the week, but by Wednesday, he was just not tolerating even the smallest amount of Pedialyte.  We ended up in the ER first thing Thursday morning.  His labs showed his creatinine and Potassium were extremely elevated and his med levels were out of control.  We gave him a bolus of IV fluids and got him a room on the 9th floor.

We held most of his Thursday meds as they all hit the kidneys pretty hard.  By Thursday evening, his Creatinine and Potassium had already dropped in half.  Whew.  Owen hadn't eaten much for about six days and was down 8lbs.  He slept better than he had all week.  This morning (Fri), we drew labs and things looked almost back to normal.  The only major thing was his lips encrusted in blood since his INR was up to 8.  Besides that...he feels human again!  He has been eating and tolerating his gtube feeds just fine.  I did my best to break out of here today but lost the battle.  They don't carry his formula here and they don't have a few of his medications in the hospital...  the suggestion was to "go home and get what we need."  I'm kinda like.. If I go home to get medications and formula, I can just take Owen and stay put. The 9th floor is a strange place.. no doctors around (they float from other floors), no cardios, and the nurses are very sparse.  The rooms are mostly empty and we are at the end of a very quiet hallway.  I may be missing Stanford a bit.  I am grateful that we have a team that communicates with our transplant team at Stanford and allows us to be home in AZ.

Since we are here one more night, we will eat spicy chicken wings and watch movies.  Owen had chips/salsa for lunch and hasn't regretted it.  Owen continues to kick butt and we will finish off his 10 day course of antibiotics.

This was just two days ago.... cdiff and norovirus are no joke.  Thank you for all the prayers and well wishes.  My starving boy can't get enough to eat.  He just asked "doesn't the cafeteria open again at 10pm?  Can you go see what they have and Facetime me so I can get some stuff."

Norovirus and Cdiff

After spending 8 hours in the ER at Phoenix Children's, we have a diagnosis of Norovirus and Cdiff!  I have no idea how he caught anything as we are home bound and super careful even at home. I guess we did go to the dentist and got FLU shots.. but we were super careful!  His poor tummy has been hurting the last few days and he had a 5lb weight loss.  He is still eating and was acting okay, up until yesterday.  He started laying around and didn't want any tube feeds.  Of course I do everything I can to treat at home and even blended up the BRAT diet to put into his tube.  Nothing worked. :(

This morning we got up and off to the ER.  I had them run two stool samples to be certain of the diagnosis.  His labs looked great and his echo is unchanged.  I was thrilled to hear it was a 'normal' issue, but Cdiff!?  Really!?  How did he get Cdiff?  When he was inpatient at Stanford after two weeks on IV antibiotics we tested a couple times and it was always negative.  We will do a 10 day course of oral Vanco and hopefully be rid of it!

Logi has been his energetic self, but did puke up a bottle of milk just before bed last night and then was warm throughout the night. Not warm enough to wake him for Tylenol, but warm(ish).  I'm guessing he has Norovirus as well, but he doesn't have any Cdiff symptoms.

We will hold diuretics one a day until his eyes aren't looking so dark and sunken.  He seems hydrated and is getting tons of fluids in his gtube.  Just not a lot of calories or nutrition because it seems to exasperate the symptoms.

I just scrubbed my house, used Lysol on all the doorknobs and switches, bleach on the toilets.  Darn germs.  Thank you for all the prayers!!

Living Life

We have been so busy getting things done around here.  I feel like I am in constant nesting mode and I can't slow down.  We are in the thick of applying for a new home loan, trying to find Kam a car, and getting caught up on three months of being gone.  There were piles of mail that I had to go through, call on and shred.  Closets and drawers need cleaned out because everyone has grown and the seasons will be changing soon.  I cleaned out my bathroom drawers/sinks and found 8 bottles of sunblock.  It felt good to donate and discard of so much stuff.  You can walk through our closet now and find anything!  The pantry, the fridge, the garage... it just all built up.  Carson was so busy working and keeping things moving around here that he didn't have time to do the organizing and decluttering. It feels so good to be home!

Both boys got their teeth cleaned and Owen has his first two baby cavities ever that were probably due to the long intubation.  Now I have to find a dentist that is contracted with the hospital to do his dental work under anesthesia since they can't do cardiac kiddos in the office.  Logi loves to brush his teeth but was not thrilled with the first dental experience.  No photos because I was wrestling a giant crocodile (er.. 20 month old).  Kam has her orthodontist appointment to check her retainer and thankfully it was a 5 min check.

Owen got to have a dance party with Gigi and Grandpa made his favorite ribs with spicy bbq sauce!  Owen called it a "feast" and loved it so much!  Logi ran circles around them and we were all laughing hysterically at Owen's dance moves.  It felt like life was "normal" again.

Owen had labs on Monday and his levels are super high.  His Prograf (anti rejection) level was up to 13 and range is 6-8.  His INR (anti coagulant level) was 4 and range is 2-2.5.  We drew labs again this morning and he was such a champ as always.  His poor body is covered in bruises and his veins are all bruised so we had to use his hands.  The infant heel warmers worked super good on his hands.  We spend so much time at the lab and Logi just runs around and entertains the other people waiting. 

Since we were busy poking Owen for labs, we figured we would go get Flu shots at the Peds office.  Logi caught up on his vaccinations too.. so it was a win win.  Logan doesn't really care about the shots and whimpers for a whole 2 seconds.  Owen spent 30 minutes negotiating where the Flu shot should be injected.   Kam was a rockstar and is just happy she  is old enough to donate blood now and they do a blood drive at her school during lunch every other month.

Kam got her license while we were in Palo Alto so I haven't driven with her in forever.  She has been driving a ton and I'm not nearly as terrified as I was.  I guess it does gets easier.  She has been looking for a car and that is our goal this coming weekend.  Find A Car!  We only have one car right now and it's super fun to share but I would like my car back.

 

I couldn't wait to get my hair done.  Kam and I went yesterday and tt felt so good to get my color refreshed.  We caught an Uber home so Carson didn't have to drag the boys out.  Owen gets super tired and worn out in the heat.  He just can't tolerate doing too much of anything.  I'm so glad the weather is cooling down.

I just booked out next trip to Stanford for October.  We have big decisions to make in the upcoming weeks.  Owen is staying stable and healthy.  I just turned in all the paperwork to start Homebound school for Owen.  He isn't as excited as I am about school starting.

 He doesn't have many friends his age... but has lots of cousins.  A teenage neighbor came by yesterday to play games and Minecraft with him on the PS4 and he loved it!  He loves to have people over to chill with him.  If anyone wants to come hang with Owen, play games, eat snacks... he would love it.  I guess he is tired of hanging with me. :)

 

We are so happy to be home!!  Owen is status 1B and we have life flight all set up. Meanwhile..I continue getting things prepared here.  Looking forward to a productive weekend!

HOME

A few days at HOME and I am exhausted.  It is wonderful to be home and we are finding a new routine.  Before leaving Palo Alto on Tuesday, we had early morning labs and a quick clinic visit with the transplant team.  Owen looks good and we made our way to the airport.  He kept saying "I didn't think this day would ever come!" 

Pure happiness as we made our way through security and boarded our plane.  We did have the added drama of United Healthcare deciding last minute to DENY his life flight from Phoenix to Palo Alto when his heart offer comes.  They'd rather pay for him to be inpatient than to cover a flight.  Unreal. Because of this nonsense, we had to make Owen inactive on the transplant list until we got things approved.  It's actually been a small blessing because I can breath for a day or two and not stress getting "the call".

Owen had clinic with his Phoenix Transplant team on Wednesday, bright and early.  His echo looks really good considering what his heart has been through.  It's still very sick, but good considering.  Dr Z got a new baseline on Owen and we will be followed bi weekly and head back to LPCH in one month.  Of course they all hope we will have a heart by then.  We'll see.  I think that everything is in God's hand at this point and we are just trusting the process.  I am just in awe of the miracles that have happened in his life so far.  We lost a heart buddy this week to something VERY similar to what Owen just went through from the CAD.. but he didn't recover from the arrest.  Pray for this boy's family.

Logi is thrilled to have his big brother home!  He is the most active, sweet, full of love baby ever!  He loves his "mamamama" so much and has been totally clingy (as expected).  I could use a little less clingy at 2am, but he missed me so much. 

Kam is getting to be a teenager and not a "mom" for now.  She loves on Logi and Owen but then can go be a teenager too.  She has taken on a big load while I was gone and I she deserves this break!  Carson is loving having us home as well.  Nothing like getting your wife back ;) 

Life is perfect.  We are so grateful and happy!  Owen is relisted as of now and we have life flight all set up.  We keep hearing that things could happen SOON from the team.  You never know so we are not stressing it and just choosing to live life.  Thank you all for the prayers, support, donations and meals!  It has been a lifesaver for us!

Weekend Together

We broke free!!  On Thursday afternoon, on our 100th day inpatient, Owen was discharged.  Carson, Kam and Logi met us at the hospital and we were outta there.  This weekend has been wonderful in every way.  Being together as a family of five, out of the hospital, has been the biggest blessing.

We got settled into the hotel, moved out of the RMH and took a long afternoon nap.  We had CPK for dinner, walked around the mall just a bit and went to a small little park to play before heading back to the hotel for the night.

 The next morning we headed out to find Owen some new tennis shoes.  His feet have grown so much and his poor gait is pretty weak.  We had the Creamery for lunch and followed that up with a two hour nap at the hotel.  Friday evening, we went to the Magical Bridge park and listened to music in the park while the kids played hard.  This park is incredible and made to accommodate all special needs kiddos. 

Logan went up and down this slide hill a billion times.  Owen got tired so I carried him up most of the time and he went down on his own.

We found a little bakery for soup and sandwiches for dinner before calling it a night. Another perfect day in Palo Alto.

Saturday was a get er' done kinda day.  I had to go to a billion stores.  We relaxed in the hotel a lot and watched too much tv while snuggling.  We made out way over to the mall to eat on the patio at Max's and called it an early evening. 

This morning we headed to Pacifica to play with some friends.  Allison is being super generous in letting me store a bunch of blankets, pillows and things we will need when we come back for transplant.  Josh, Sam and Owen played at the park together until Owen was just exhausted.  The weather was chilly and overcast... totally out of our norm and it was beautiful!

We had to call it an early afternoon so we had time to pack.  Owen has been begging for Olive Garden breadsticks since we got here, so we made a special trip on our way to the airport.  It was hard to say goodbye to Kam, Logi and Daddy again. :(  We will see them again in TWO days, but it didn't make the goodbye any easier.  It was hard coming back to the hotel without them this evening. 

Logi missed his mama madly! He wouldn't let me out of his sight and kept saying "mamama" while grabbing my hair and smooching on me.  We snuggled in bed every night.  Two more days!  I can't wait to give more time to Kam and Carson at home.  I can't wait to cook, do dishes, throw in a load of laundry and be present for my entire family.  Two more days!!!

Owen and I have a busy Monday and Tuesday.  Prayers that he remains stable and that we learn his new norm.  He is great at self regulating but you can tell he wants to do so much more than his body can handle.  We are so grateful for the past weekend we had with our family and even more grateful that we will be reunited at home very soon!