update on Ella's cardiology visit yesterday

We went to Dallas yesterday for a check up, and it went pretty well. Ella's blood pressure is stable, so we are hoping to lower her blood pressure medication next week, also her x-rays are still stable so we also got to drop one dose of diuretics a day! We are down to 3 doses of diuretics a day now! Her weight is still down, but she is eating a little better so we are hoping that picks up soon.

Our biggest concern right now is that her sats are still a little lower then what we were hoping and expecting. She is satting 78-81 for the most part, and while that is a little low for post Fontan, we are thankful she is no longer dropping dramatically with activity. They told us it could take 2 to 3 months before Ella's sats completely settle out so we are praying they come up by then. If they don't come up in the allotted time we may be looking at another cath surgery to just make sure everything is functioning properly since surgery. We would love for you to pray with us that this is not needed!

Ella still has a small cough from her blood pressure meds, but it's not nearly as bad since we lowered the dose, she is still having some nightmares, but not every night, she is still vomiting some, but that has also gotten better. She has vomited more then she was since our appt. yesterday since it is typically fulled by anxiety, but overall she is doing very well!

God has been so merciful to give us a smooth post op recovery so far, please continue to pray with us that she stays healthy while her immune system rebuilds and also that her lungs will stay dry enough, that her blood pressure stays stable, and that her appetite will increase! Thank you all so much for continually praying for our sweet sunshine!

                                        She was worn out after her big check up!

                           

Improvement!

~Happy report today~

Ella is doing well! We are so thankful her cough is decreasing, it is still there, but lowering her dose of blood pressure meds has helped significantly. As the days pass her cough should continue to improve! When we lowered her dose of medication we had to start checking her blood pressure everyday to make sure that it stayed low enough. Praise the Lord it has been stable! Her nightmares seem to have dropped off too, I guess she could still be having them, but they aren't waking her up anymore every night. She is still vomiting some, but her appetite is a little better. She is drinking lots of water so that is good!

 We are nervous as we wait for July 17th which is 6 weeks from surgery and typically the highest risk for something to go wrong with her new circulation. It is also the time frame it typically takes to rebuild her immune system from being on bypass.

We are just so very thankful for how well Ella is doing, of course we have had our setbacks and bumps in the road, but it seems that things are finally smoothing out a little! As of right now we plan to head back down to Dallas on the 28th for her next follow up, but I will be calling to them tomorrow just to touch base on how she is doing.

Please continue to pray that she doesn't get sick, that her cough completely goes away, that her vomiting stops, that her incision remains infection free, that she will begin to gain weight soon, and that we will have wisdom as we continue to learn and care for Ella and her new circulation!

We are so blessed that you all continue to life up our sweet sunshine in prayer as she heals!

Home again!

What a long day! We drove to Dallas this morning, had our appt. and then drove back home! That's 7 hours just driving time, but it's good to be home!

Because Ella was having such high blood pressure after surgery, they had started giving her a higher dose of her blood pressure medication to lower it. Today her blood pressure was too low, so we think what might have happened the other day is that her blood pressure was way to low and caused some problems. Also a side effect of this medication is sometimes a cough. When Ella first started this medication she was a baby and it did give her a cough, but it wasn't near this bad and eventually her body adjusted to it. We are hoping that her body will adjust to the higher dose. That being said, we are lowering her dose some to hopefully help her cough and regulate her blood pressure a little better.

Also we are lowering her dose of diuril (which is one of her diuretics to dry out her lungs) since her x-rays are still looking stable! This is a huge praise! The wet lungs can be such a hard battle! Ella is on 4 doses of diuretics a day to try to keep them dry, she is so dry, her eyes are a little sunken in. So we are glad we get to cut back some on that. Prayer request will be that her lungs stay stable even with the lower dose of diuril.

Ella is still losing weight due to the vomiting and lack of appetite. She is also having lots of gagging and dry heaving, from her oral aversion from being on the ventilator, she is also still dealing with the bad cough, all of which are very painful just after surgery. We would love for you to pray with us that her vomiting/gagging/dry heaving/coughing all subside soon and that her appetite will return!

As well as Ella is doing, she is only a little over 2 weeks out from major open heart surgery and her body needs a lot of adjusting still. God really is helping her along the way and we are so thankful! Please keep her in your prayers as her mind and body continue to heal! Thank you!

Our friends decorated our house for our homecoming the other day! 

Heading back to Dallas

We are heading back down to Dallas first thing in the morning to see Ella's cardiologist. We packed a bag just in case he wants us to stay in town for awhile. To say I'm disappointed to be going back just two days after getting home is an understatement, but seeing Ella with sats in the 50's, blue, low energy, and coughing so badly she vomits we certainly know it's the right thing to do. As always, we appreciate your continued prayers so much more then you can possibly know! 

Special prayer request that Ella gets some much needed rest tonight and a break from the coughing please! 

update

Ella scared us a little, but seems to be stable now. We have only been home about 24 hours and we nearly had to go right back. With Ella's new circulation, they would like Ella's sats to be above 85, they are okay if it is 80 and above, with lots of activity they will allow 70's (even though they don't like it) as long as it comes back up fairly quickly. Today, in addition to having less energy, Ella dropped her sats into the 50's. She was really blue and had only walked from the bathroom to the living room (in our super small house). They are definitely concerned, but after some time resting on oxygen she stabled back out. With the approval of her cardiologist, we are going to wait until Thursday to go back to Dallas, unless of course things get worse tomorrow. At this point she is back to her low baseline and off oxygen. We were supposed to go back on the 28th, but under the circumstances her cardiologist felt like it would be best to see her sooner. We ask that you continue to pray as we face this scary part of learning her new normal. Also her cough is really bad, prayers for that are also appreciated, between that and her nightmares, her sleep is not as restful as we wish it was. Again thank you all!

Pray

Please pray, Ella is having some low oxygen right now. Thank you! 

prayer request

We are home and settled in! We do have a prayer request though. Ella has developed a persistent cough that is really getting bad. It doesn't appear to be a cold or allergies, and although coughing is normal after being on a ventilator and with having wet lungs, it still is more then they would expect at this point. It is making her choke and keeping her awake and night and nap time. No other symptoms are present, but we need it to subside soon, thank you in advance for your prayers!

HOME!

Look out Oklahoma, here we come!!! Can't wait to get our miracle home! Prayers for safe travel appreciated! God is SO good!

Post op testing

Tomorrow at 8am we have to take Ella back to the hospital for all the follow up tests. PLEASE pray for it to go smoothly, protection from germs, and good test results. It will be a long day and since Ella's lungs have been a little wet and her electro lights have been a little off, we are praying tomorrow's results will be better. Also Ella is starting to have fits and also when she sees the hospital she says "no more hurt" "no more owies" "no more x-rays" "no more band aids". It breaks our hearts. We thank you all for your continued prayers, they are so important!

In honor of Father's Day here are a few pics of the world's best daddy!

Update

Ella's labs and x-rays looked stable this morning, we will repeat the tests and have a full post op visit on Monday. Please keep praying! Thank you! 

Big news!!!!!!!!!!!!!

Day 8 post Fontan and we have some pretty fantastic news! We got discharged!!!! We have checked back into the Ronald McDonald house and will be here until after all of our immediate follow up appts. and tests. We need your continued prayers for Ella to stay healthy as her immune system rebuilds and also continued prayers for her lungs. We will be going in tomorrow morning for labs and x-rays. After this surgery, the lungs can often develop fluid build up even after discharge, and in some cases they will have to be re admitted to the hospital, so although we are out for now, she is still in need of your prayers!

We are in awe of God's mercy as we have passed this next step in Ella's Journey! She has surpassed all expectations yet again, so humbling to be her mom. We are just so happy right now! Both of us had tears as we watched Ella "run" down the hall of the Ronald McDonald house towards the same room we left to go to the hospital heading for open heart surgery just over a week ago. Ironically, today is June 13th which is also the day Ella's Fontan was originally scheduled for! We were supposed to just be sending Ella into surgery today, I am once again SO thankful God had other plans!! 

Really words aren't enough, so I'll leave you with some pics of our parting from the hospital! Ella has fought through her 4th open heart surgery and is still smiling! 

We got packed up and had to wait forever!

Our not so patient, oh so excited, about to break out, so sleepy, relief, faces ;) 

                        Hooray!

I may have been running hence the blur ;)

Leaving the hospital in our rear view mirror (even though we have to go back tomorrow)! Best feeling ever! 

Watching our miracle "run" and feeling overwhelmed with thankfulness of His faithfulness! 

Quick update

Ella's lungs are still pretty wet, but did have some improvement from yesterday. They are trying to get all of her meds oral and none IV, since we can't get out of here if her lungs are dependent on IV diuretics. So even though her lungs are still pretty wet, they are giving all meds orally today and we are praying her x-ray looks good in the morning! Please pray hard that it looks better despite switching to oral diuretics. We are so thankful for your prayers! 

We escaped downstairs to see the trains today :) (with permission of course) sure was hard to back upstairs! 

Post from Ella's hospital room

I just want to thank you all for the prayers for our sweet sunshine! Ella has done so well. The nights and mornings have been hard, but seem to be improving. 

               Pre op height check

 

                  Pre op x-rays 

              Pre op echo and EKG

                Night before surgery

                  Morning of surgery

                    Post Fontan!!!

     She insisted on getting dressed right away ;) thanks to a friend from church for making these super handy snap tops! 

Poor baby was SO thirsty, it was several hours before she could have anything,

Finally she got some cheese to snack on

                     Lots of sleep

      First time out of bed since surgery

Singing "if you're happy and you know it" after walking over 450 feet that day!!

Moving out of the PCICU day 4 post op

        Settled in on the recovery floor

Walking as much as we can to clear those lungs!

No oxygen! Great numbers! (Green-heart rate, blue-oxygen) 

       More sleeping but no oxygen!

Wagon rides and blowing her recorder "flute" as she calls it. More lung exercises. 

            Eating dinner together :)

              Our room with a view

              Little tinker bell roaming!

              Feeling pretty good 

Ella has had some set backs, but over all she is doing very well. Right now we need her lungs to dry up as they are too wet and parts of them look collapsed. Also we need her bowels to stay regular and her urine output to be more then her intake of fluid. Right now she also has a large area on her stomach that is raw and blistered from all the tape going on and off. It looks absolutely horrible and is painful, please pray that it heals quickly. Also continued prayers for protection from germs and illnesses also for her incision and chest tube sites to stay infection free! 

Ella has been amazing through all of this! She is so so so brave! Every night she has nightmares and everyday she has some sort of intense pain on top of just the pain from having open heart surgery, and she doesn't complain. Her anxiety is very high especially anytime someone other then Jon or I are in the room. She is really making progress though! She has now had 2 IVs pulled, 1 new IV started, 2 lab sticks, 1 lab draw (plus a failed attempt), neck line pulled, art line pulled, pacing wires pulled, 2 chest tubes pulled, dressing changed, chest dressing pulled, daily x-rays, she is covered in band aids, wires, and tape etc. basically she is a rock star!

We know your prayers are making all the difference! Please continue to pray for our girl!

A Good Night

The evening started with good news when Amy send a report that Ella had a "FANTASTIC night nurse". This was welcome news as the nights have proven to be difficult. The morning report came in at about 8:40 saying Ella was STILL asleep!! The night was much better! No vomiting and minimal tears when woken to take medicine or vitals. We are grateful for the sweet little smile on our Sunshine's face as she rests.

Prayer requests for today:
Oxygen coming up
Drainage to be good (Since receiving the first report today we got word they removed a couple more drains today. It was traumatic and painful but Ella was amazing!)
Wisdom for the team
Appetite to come back
Strength
Safety from germs/sickness
Ella's understanding that just because someone is in the room doesn't mean they will hurt her (They have started using the phrase "not for Ella" when someone comes in on other business besides a hurtful procedure.)
Less Vomiting

Good Night Sweet Sunshine, Rest Well.

The morning continued to be rough but after a long morning nap she woke up seeming to feel much better! It's always nice when she is feeling like herself!

Late this afternoon she walked a good long ways (the length of a football field and a half!) and the best part is when they got back to the room her heart rate was great and her oxygen was great! Yay! She was able to take her meds and so far they have stayed down. She has eaten a little more today than yesterday. Praise the Lord!


The specific prayer requests are:
For tonight and tomorrow morning to well. (They have really been tough the last few days.)
For meds and food to stay down.

Thank Prayer Warriors!

Aunt Rachael
 

The Journey Continues

Yesterday afternoon was pretty good. Ella walked twice and was in pretty good spirits. The evening and night brought some difficult challenges including vomiting (including pain meds which couldn't be re-given), high heart rate, low oxygen (they've had to bump up the about being given),  high blood pressure, grunting with her breaths, and this morning x-rays show more fluid than yesterday (although that was to be expected).  We all knew this was part of the long process of recovery and her precious little body is and she will continue on. Continue to fight. Continue to heal. Continue the journey. It's a long road to travel.

Thank you for your continued prayers!

Aunt Rachael

Still Has Her Smile

Last night was extremely hard. Ella got sick a couple times which is extremely hard on her! With each heave her heart rate speeds up and her oxygen drops. Those two don't go well together and as a result Ella starts turning blue as her body is doing its thing. Amy reports that, "Today is better than last night, and worse than yesterday." They are getting her out of bed again soon.

Prayers for strength as the day goes on!

Aunt Rachael

As the Day Comes to a Close

As today comes to a close there are many things for us to be grateful for! It was a pretty calm day for Ella for the most part and she was able to rest some more. She kept the small portions of food down that she ate and she had a new cousin arrive back at home!

Late this afternoon they let her get up and go to the potty. She did great with that and was worn out after they got her back to bed.After all the hard work to get up she did throw-up some tonight. Mostly dry heaves.

Amy is enjoying sweet snuggles with Ella tonight! She is getting to sleep with her tonight which makes for a happy Mommy and happy Ella.

She is refusing her meds which is causing her to be in more pain. She wouldn't even take them with a crushed Popsicle.

So here are the evenings prayer requests:

• Ella to take her meds
• Her oxygen to stay up so she can remove the nasal cannula
• Drainage to slow down
• Appetite/thirst to increase
• Pain level to go down 
• Rest for all

Thanks again to everyone lifting up Ella Dawn!

Aunt Rachael

P.S. Amy just sent a message saying Ella just got sick again. Praying the nausea will subside and not continue through the night!

A New Day With New Praises

Good Morning Friends! Our Sunshine smiled for a quick picture this morning!

Praise the Lord the night was as good as can be expected. Ella managed to even rest some. They have pulled several of the tubes and lines that were in from yesterday. Ella has finally been reunited with her Elmo cup and she has been able to hold down the water she is drinking. They will try food today. Please pray for her body to process that well.
She really wants to get out of bed but the tube that is restricting that isn't quite ready to be pulled. So, that would be another prayer request.

All in all, things are going fabulously and we are praising the Lord for His goodness!

Aunt Rachael

Recovery update

Ella is doing well overall in recovery, but she is very uncomfortable. She is off the ventilator, but still has a tube in her hand, tubes in her stomach & chest, an IV in each foot, and some wires going to her heart in case of emergency. She has to have her hands tied down until those wires can be removed because it would be very dangerous if she pulled on them. She is very very thirsty and keeps crying for a drink, but she cannot have anything until at least 7pm, and then only about a teaspoon per hour. They have to let the stomach recover from bypass before she can have more. She also keeps crying to go home. We appreciate your continued prayers for peace & comfort for her during this time, that she will be able to rest. And also please continue to pray for Jon & Amy as well.

~Aunt Kristina

Let Recovery Begin

Amy and Jon have now been allowed back into the ICU room with their Sunshine. THey got a quick peek as they were rolling her in the hallway to the room. Even though she is on the vent she was already starting to breath over it! Keep going Ella! You're doing great!!!