Enjoying Being Home....

Hey everyone,  I know it's been awhile since posting but we have been busy enjoying family time together.  Reagan is doing great.  I know you all must have prayed hard because soon after the last post Reagan quit retching and vomiting and has been trying to eat and put things in her mouth.  Such a relief to see the Reagan from before.  She is still on all 3 meds for her withdrawals and she has her moments but for the most part is a happy girl again.  She has started back up on all of her therapies (speech, physical & occupational).  She's still a little wobbly on her feet but trying to move and groove.

The day after coming home we visited her cardiologist and had her lab work done.  All her labs looked good so he cut both of her diuretics from twice a day to once a day.  The following week she had a checkup with her pediatrician.  Because her oxygen requirement had gone up from 1/4 L (that she came home on) up to 1 L... an xray was done.  The xray showed her lungs quite "fluffy", in other words retaining fluid, so we had to go back up on her diuretics to twice a day again and will stay on that until we see the cardiologist again on July 1.  The day at the pediatrician turned into a long visit because of the xray, blood work and then waiting until the pediatrician got ahold of the cardiologist to give him the results.  Thankfully, our pediatrician's 12 yr. old daughter had come to work with her mom that day so she entertained Reagan while we waited.

Reagan and Taylor coloring together

In our family time, we've enjoyed going to see Toy Story 3 with the kids

Note: The glasses made for a cute pic but Reagan would not wear them at all during the movie, only before and after the actual movie.

We were also able to enjoy a nice Father's Day at church and them lunch afterwards

Outside the restaurant...good ole Texas BBQ that we missed out on while in California

(although, Reagan went more for the pickles and onions than the BBQ itself)

In the very near future, we have our next big stresser of the year but know God will see us through!  Thank you all again for all your love, support, prayers and encouragement!  Please continue to pray for our friends the LaPointes as baby Arden is still in the hospital in CA.  

Also, baby Hunter's family is a military family (Marines) we met while there.  He had been in the hospital about 3 weeks when Reagan was admitted and just recently got to leave the hospital but still has to remain in the area and get checkups 2-3 times a week.  Please pray they both get well enough soon so that they can go back home.

Home Sweet Home

Yes!!!! We made it home.  Sorry for not updating sooner.  Reagan was discharged on Wed. from the hospital and spent Wed. night at RMH with us before we all flew home on Thurs.  Since being home, I have been busy unpacking, giving meds, breathing treatments and catching vomit.  Yes, Reagan is still withdrawing as well as she has thrush so she has been retching and vomiting alot.  I hate seeing her this way as she had made so much progress before surgery and did not do that anymore.  She also ate, talked and walked which she is not doing at the moment.  I know she will start again it's just hard seeing her not happy when we all know what a happy child she normally is.  Anyway, we weren't even home 24 hrs. before we had to get up Friday morning and head to Austin for a lab draw and dr. appt.  She had her blood drawn Friday morning and Friday afternoon we saw her cardiologist, Dr. Johnson.  He said her creatinine was .6 (even better than her pre-op level) and all her electrolytes looked good!  He also said her echo they did on her at the hospital on Tues. looked GREAT!!  He told us we could stop one dose/day of her twice daily Bumex and Aldactone (two diuretics).  I am so glad as I feel these upset her tummy.  Next week, we will see her pediatrician and have them do another blood draw and hopefully be able to stop the diuretics all together at that point.  We also still have to see the pulminologist, nephrologist, and neurologist.  Fun, fun, I'm sure Reagan can't wait to see another doctor!  Anyway, Rod is off work for the next week so we are also trying to enjoy some family time.  This is hard as Reagan doesn't want to have anything to do with anyone but her mama so it's a little hard for me to do things with the fam.  I wanted to thank our neighbor, Debra, for driving our car to the airport and picking us up on Thurs.  Also, she had us over for dinner that night which was wonderful to have a home cooked meal for a change.
Here are some pics from the last few days:

Discharge day- getting loaded up to leave the hospital

In front of LPCH

Asleep on the couch at RMH

Nolan trying to get love from Reagan (poor thing, the only time he can get near her is 

when she's asleep because of her withdrawals)

Headed to the airport for the ride home

Loaded on the jet and ready to go home....and the passengers are:

Daddy & Reagan

Mama & Nolan

and of course, Aunt Kay

THANK YOU WILSONART FOR THE RIDE HOME- WE TRULY APPRECIATE IT!!

Aahhhhh.....finally home!

Our evening of dinner and swimming at the Moore's:

 

Nolan enjoying the pool.  Reagan can't swim for another 2 weeks because of her incision.

so she was just happy visiting with Gracie, whom she missed greatly while away!

THANK YOU DEBRA, BUTCH, MARIBETH & BRENT FOR DINNER.  IT WAS DELICIOUS!

And there you have it, we're home and trying to get back to a normal life....

laundry, dishes, etc. but so thankful for it!!!

Please pray for Reagan's thrush to get better real soon as well as her withdrawals.  Thank you all again for all your love, support, prayers, cards, etc. during this journey!

D-day is nearing...........

D-day is nearing

We're almost to the end

I can't believe it's finally here

The best is yet to begin!!

Today is supposed to be our last full day in the hospital.  Discharge is planned for tomorrow (Wed).  We will spend Wed. evening in the RMH as a family and then fly home Thurs. morning.  Our gracious friends at Wilsonart have offered to come and pick us up on their jet.  We are extremely grateful!!!

Reagan got her broviac line out on Monday afternoon.  Today she had to be pricked for labs to get a last check at all her levels.  Her renal levels have continued to go down to which we are so thankful.  Her BUN today was 34 and creatinine was 1.1 (pre-op level was .7) so she is not far off.  She has been a little nauseous & retching over the weekend but I believe this will all clear up once we are at home.  Once home, we will have follow-up appts. with all her specialists (cardiologist, pulminologist, pediatrician) plus as a bonus we've added a new specialist, nephrologist, due to her kidney injury this hospitalization.  Aren't we lucky to have so many great doctors looking out for Reagan!  Next week, should be full of doctor visits.
Reagan has also had an EKG and echo today as a last check at her heart function before leaving.  She is still on 1/4 L of oxygen which the docs are fine with her going home on.  Because Reagan has underlying chronic lung disease, her lungs always take longer to heal and they say that a month from now she may be fine without any oxygen at all.  They basically just want her oxygen saturation levels above 90 and without the 1/4 L now she dips to 87 so hopefully we will not need the oxygen much longer.
A huge thanks to our neighbor Debra for feeding our fish and getting our mail.  Also, for sending the books with Nolan.  I read the book, "Dogs Do, Dogs Don't" to Reagan this morning and she smiled at almost every page.  We've just been hanging out today.  Here are some of the things we've been doing to pass the time:

working puzzles

watching cartoons together in Reagan's bed

and here's sweet Nolan watching a movie (Shrek 3) on the laptop

Please continue to pray for my mom & Lonny who are driving cross-country to get home.  We are actually going to beat them back to Texas!

More Light Through the Trees!!!!!

Sorry I haven't updated in two days.  We have been busy around here.  Friday, the boys flew in and it was a nice reunion with all of us.

Aunt Kay actually went to pick the boys up from the airport because I was at the hospital tidying up our plan to get out of here with our primary attending, Dr. Zebrack, before she went off service.  Also, Reagan had a lung profusion scan on Friday morning, same time the boys were landing.  This is one of the last things they usually do before discharge each time.  Dr. Zebrack got it scheduled for Friday so that would not hold us up next week trying to get discharged.  The plan is basically to watch her over the weekend.  By the way, her numbers Friday were...BUN 70 & creatinine 3.0 and then on Sat. were even better at 65 & 2.3.  We are so happy because this time last Saturday the renal team was talking about putting her on dialysis with a creatinine of 4.7.  She has basically cut that number in half in the past week.  She is still on one more med as far as renal goes which is i.v. It will either be stopped Sunday or Monday.  The plan is to check her levels one more time Monday morning and then if all looks good have her broviac line taken out on Monday.  We are praying she is dischargable by late Monday or sometime Tuesday.  Please pray for nothing to come up in the meantime to alter this plan.  This has been a long time coming and we are so ready.
Late yesterday, Reagan began vomiting.  This is usually always an issue for her while in the hospital.  Fortunately, we have not had to deal with this so far this time.  I am pinpointing it to either her Bumex which was switched from i.v. to p.o. on Thurs. or withdrawals.  She has been getting Zofran for the nausea.  This is not a concern for me as far as discharge and I am trying to reassure the team I am fine taking her vomiting and all.  Not that we like to see her this way, but just want her out of the hospital as soon as possible.
She has been enjoying wagon rides the past two days & time with all the family (Mom, Dad, Nolan, Mimi, PawPaw & Aunt Kay).  Needless to say, she's well taken care of!

Nolan, you're such a good big brother!!!!

Now, that Aunt Kay is here she has been staying with Reagan at night so my mom & Lonny could reverse out and get back on a regular schedule to prepare for their long journey home.  The plan is for them to head out Sunday afternoon. Because this was there last full day here, they stayed with Reagan today so Rod, Nolan and I could spend the day together.  Our friend here in the bay area, Lisa Shirley, had invited us to her daughter, Quinn's, birthday party.  Her son, Kyle, is Nolan's age so he enjoyed getting out of the hospital and spending a good 2 1/2 hrs. playing at the park with other kids. 

It was a beautiful California day so Rod and I definitely enjoyed the sunshine at the party.  Thanks again, Lisa, for inviting us!  After the party, the three of us went to see Shrek Forever After in 3D.  That's the first movie I've seen in I don't know when.  After the movie, we enjoyed dinner together.  Thanks again to mom & Lonny for staying with Rea so we could enjoy a day together!

Another Good Day....

Another good day for our girl.  Today her numbers were: BUN- 78 & creatinine- 3.6
We are getting closer and closer to that 3 to avoid dialysis.  There was even talk of discharge next week if her numbers keep moving in the right direction.  Depending on what her numbers do by Monday, then the decision will be made to either discharge her home, to RMH, or to Dell Children's in Austin.  If her numbers are good but still not low enough they may discharge her to RMH with us and then we would have to come back maybe every other day for outpatient lab draws until she's good enough to go home.  If for some reason the progression downward slows and she would have to be monitored for longer then we could transfer to Dell Children's in Austin.  My hope is that she makes a complete turnaround and is dischargable to go HOME sometime next week.
Reagan had a good day.  The golden retriever that is part of the Pain Management team here came by to see Reagan today.  She enjoyed seeing and petting the dog.

She also got to go for another wagon ride.  We have been going on one daily now. 

Our friend, Lisa Shirley, came by just in time for the wagon ride so she was able to go with us outside by the fountain and see Reagan enjoying the fresh air.  She also brought me some Sprinkles cupcakes.  Thanks so much, Lisa!
Physical Therapy also came by and worked with Reagan.  We worked on standing and squatting and also worked a puzzle. 
Last but not least, Aunt Kay flew in tonight and got to see and hold Reagan for the first time in about 6 weeks.  Reagan loved seeing her and smiled for the event.

My boys fly in Friday morning.  A huge thank you to our neighbor, Dick Mayfield, for getting up at the crack of dawn to take them to the airport.  I can't wait for us all to be together again and for Reagan to see her bubba.  Last time, he was here she was still out of it on the ventilator.  I know brother's company will be the perfect medicine for her.

4 weeks and counting....

Reagan has had her best day ever so far.  I came in this morning to her sitting up in the bed and coloring in her Dora coloring book.  Yesterday, she attempted coloring but her hands were still real shaky.  I was beginning to think she may have some neurological damage because although her delirium has improved she has had very shaky hands, almost like tremors, and couldn't quite figure out how to use them.  Today, she reassured me she is still there.  I was able to see my baby again that I have not "seen" in 4 weeks.  Today, she held the crayon correctly and actually colored the pictures without shaking.  She played with stickers and bubbles.  While reading books together, she actually pointed to the objects in the book that I ask her to point to.  She stood up for the first time and put weight on her feet. 

She actually loved this & I think it made her feel like herself again.  In fact, she did not want to take her shoes off after standing and fell asleep with them on. 

I am loving seeing that little spunky personality of hers come back.
As far as her kidney function, her numbers came down again today (BUN 88 & Creatinine 4.1).  We are still praying to hit that 3 before long because that is when the renal dr. will feel more certain that she can avoid dialysis. 
Aunt Kay is flying out Thurs. evening and Nolan & Rod will fly out sometime Friday.  Thank you to Freya for the Southwest pass.  My mom & Lonny will stay through the weekend and plan on heading out probably Sunday for their long journey home, pulling their camper.  I am so thankful to them for coming and helping me all this time.  Please pray for everyone to have safe travels. 
Thank you to my neighbor for having our yard mowed again & bringing my boys dinner one night.  We truly appreciate all your help!

Not out of the woods, but seeing light through the trees

Not out of the woods yet, but Reagan's kidney function numbers has slowly started declining for the first time!  Praise God!  If they had or do go any higher she could still need dialysis.  Or even if they hang at this level too long.  We are hopeful and know God will heal her kidneys.  The renal dr. says he will feel more comfortable that they are going to recover without dialysis once her creatinine levels get to 3.  He's anticipating hopefully being at 3 by Saturday.  Here are her numbers over the last few times they've been checked:
BUN (Blood Urea Nitrogen)
98, 95, 94
Creatinine (pre-op level was .7)
4.7, 4.6, 4.4
Uric Acid
8, 6.8. 6
She is pee-peeing.  It's just a matter of getting rid of all the toxins when she does pee.  Please pray the "getting rid of toxin pee-pee prayer"-  as if God doesn't already know!  He's probably laughing at me just typing such a nonsense statement.  Anyway, thank you all for your support.
Reagan also continues to run about one fever a day.  Cultures of all types have been sent but nothing is showing up.  I feel like it's just the fact that she has a plastic tube in her (broviac line) and until that comes out she will run fevers.  Unfortunately, she still needs a line in order to check her kidneys levels.  Hopefully, these numbers will come down dramatically in the next few days and we could get rid of this broviac line.
She has been able to go on a wagon ride the last two days which has been great.  She also is staying awake for longer periods and seems to enjoy the activities we have for her at her bedside such as coloring, watching Dora videos,

reading books, singing songs, playing with her baby doll,

and simply hugging and snuggling together. 

We have been able to get a few smiles out of her here and there as well which is the best medicine for mom at this point.

THANK YOU FOR PRAYING FOR ME!