Update on Natalie

Natalie is doing better everyday!  She has decided she loves fish sticks and wants them every meal; I do mean, breakfast, lunch and dinner.  Why, I have no idea.  Now, I do not let her eat them every meal, but I am okay with at least once a day.  I am just glad she is starting to eat more.  In fact, today has been the best day so far.  She did not eat breakfast, but had a great lunch, dinner and a couple of afternoon snacks.  I just need to get some weight on the tiny little thing.  She is like holding a skeleton right now. 

 

We did have an appointment with our pediatrician this week.  Natalie's oxygen was 79, which is not bad for right now.  Her oxygen should continue to increase over the next year.  I can't wait until someday, I can type she is in the 90s, but I will be patient for now.

 

We had xray and labs today at the hospital.  Natalie got to wear a nice little mask to keep the germs away.  She was not a fan, but dealt with it.  Her labs went better today than they have in a long time.  We had one stick and the before I  knew it, two tubes were full.  Normally, we  have more than one stick and it takes forever for her to full one tube. 

 

Ready for the big news...drum roll, please....Her chest xray looked great!  Dr. Scott, our pediatrician, called Dr. Zellers.  Zellers called and said Natalie can stop on one of her medications and can cut back to once a day on another.  That means, we are almost back to our normal medications (1 aspirin and enalapril twice a day); she will take these the rest of her life.

 

We will go back to Dr. Scott in a couple of weeks for another check up, but right now she is doing great and gaining more strength.

 

Thank you all for your support and prayers, they are working! 

Home Sweet Home

We are home!  I know, I am sorry I have not posted in a couple of days, but we have been getting settled back in.

 

Natalie's appointment with Dr. Zellers was actually moved up to Thursday.  He took her off the potassium, which she is super excited about, because from what I hear, it does not taste good at all. She still has a little fluid in her lungs, but he said that would be expected on the fontan and could last up to 6 weeks post op.  Good news, we can monitor that her in Amarillo!  Natalie will go for labs and xray here locally this week and probably every week until her chest is totally clear.  She is still on medication to help with the fluid,  but the medication allows her to hold onto the potassium.  The is good, so we do not bottom out her potassium again. 

 

She came on home with 4 medications, two of which we have taken and she will take the rest of her life.  The other two medications we will eventually wean her off of.  She does go back to Dallas in about a month.  Dr. Zellers is so awesome!  He is working us in the week of Thanksgiving so we can just stop off in Dallas for a night and day on our way to Austin verses making a whole other trip out of it.  I am done with packing a bag for a while. I am loving living out of my closet right now!

 

Natalie is super happy to be home!  She is still not eating great, but getting better.  Her activity level is still not great, but she is only 3 weeks post op from open heart surgery, so I do not blame her.  She also has pretty strict restrictions for the next 5 weeks too.

 

Carter was pumped that we were home!  He did not know we got home Thursday, so I surprised him Friday picking him up from school.  I think I got the biggest hug ever!

 

We have just been relaxing this weekend and enjoying being together as a family under one roof, our roof.  Thank you all for your continuous support and prayers!  We could not have done this without all of you.

 

I will continue to post, but probably only once or twice a week. 

 

1 Samuel 1:27

"I prayed for this child, and the Lord granted me what I asked of him"

Tea Party Anyone

What do you do when you are stuck in a hotel, but finally allowed to have a big bath?  Why have a tea party of course!

Natalie's Surgical Follow Up

Look what we recieved from being such a big girl at clinic today
Daddy, thinks he in for a lot of trouble...
PS She just told me she loved the earrings, too funny

 

Natalie had a wonderful surgical appointment today!  We actually got to the appointment early and was able to spend a little time with the Gomez family.  A sweet family from Amarillo, whose 15 month old daughter, Audree, received the gift of life this morning.  She has been awaiting a heart transplant for almost a year now and was blessed to receive the call yesterday.  I am happy to say, Audree is doing very well with her new heart, but still has a long road to recovery. 

 

Please pray for Audree and her recovery, but please pray for the donor family who lost a loved one yesterday. 

 

Natalie had labs, xray, EKG and we met with Melissa, Dr.Forbess's Physicians Assistant.  Natalie's labs have all gotten much better.  We still have a little ways to go, but we are on the right path.  Her xray was looking better as well.  She still has a little fluid in her right lung, but it looks so much better than her xray just a few days ago.  Her EKG is still awesome, which is wonderful news!

 

She has lost some weight, which is to be expected, but the girl still is not eating much.  The last two days, she eats a little throughout the day, but at night eats a lot (for her).  I am hoping we are making a turn for the good, because she is little skeleton right now.

 

She also got the little strips off her incisions today.  Man, her chest is looking so much better.  We got to take a normal bath tonight and what  better way to celebrate than have a tea party in the bath tub.  She had a blast! 

 

Thank you for your continues prayers, they are working.  Natalie is doing better everyday and getting stronger as well. 

Natalie Update

We got two great nights sleep, first time someone did not come in and wake us up for xray, vitals or lab draws.  I feel like a new women!  Natalie seems to be doing better as well.  She is walking around our new little home for the next week (Residences Inn Marriott).  She still is not eating great, but better than she did.

 

We have just been laying around playing, coloring and watching movies and I will assume this is our life for the next week.  I am not complaining either; I am going to enjoy a little down time before we head home to my 5 year old that has more energy than 4 kids combined it seems.

 

Larry is on his way home now for the week.  He will fly back in Thursday night, so he can go to Natalie's appointment with me Friday and help us drive home.  I am not sure if we will be home Friday night or Saturday.  I think it will depend on how long her appointment is Friday with Dr. Zellers and how she is doing in the car. 

 

Thank you again for all the prayers and support over the past few weeks!  I truly believe Natalie is doing so well, because of the power of prayer.

 

I will probably not update again until Monday night, because living in a hotel is not that exciting.  Natalie has her surgical follow up appointment on Monday morning, so I will update when we get back and get settled.

 

 

All clean and ready to bust out of the hospital

One last stop by the Pharmacy for yucky medication and then we are out of here

We are out!

Playing with our Minnie's our new little home

James 5:16"

The prayer of a righteous man is powerful and effective"

Getting Discharged

Natalie's EKG and potassium are normal today, that means we are getting discharged!  Thank you all for the prayers and support for the past couple of weeks.

Natalie and I will be staying for another week.  She has a surgical follow up on Monday and then we see Dr. Zellers on Friday the 19th.  I can handle one more week, especially not being in the hospital.

I will try to keep posting this week, but I am not certain how my wi-fi connection will be.  I will do my best, it just might not be everyday.

Romans 12:12

"Be joyful in hope, patient in afflication, faithful in prayer"

Potassium still low

After a 4 hour iv of potassium, Natalie's potassium is still low.  Now, it is a bit higher than yesterday, but not to where it should be.  She is now getting potassium 3 times a day by mouth.  The potassium does not taste good at all, so we mix it with a little gatorade and that helps some.

 

Her chest xray still looks the same, but it is not concerning a this point.  Natalie is scheduled for another EKG here in a bit.

 

Poor girl is just flat done.  She is so ready to be out of here and I am too. 

 

Please pray her potassium stabilizes today!  I will try to update again tonight with more information about everything today.