Ella continues to feel better…you can just tell by her clinical behavior.

She’s still fighting a lot of secretions. There are two major components: inflammation in her lungs and the hiatal hernia. The bronchoscopy will give further insight by providing a closer look into her bronchial tubes and her airway. This should tell whether or not there is aspiration occurring which could be a major contributor to the inflammation. Also, the hiatal hernia is likely the cause of the retching and is adding to the inflammation too, since her nissen is in her chest and resting into the side of her esophagus.

The Prednisolone (steroid) was helping with the inflammation and secretions over the last few days, but since we reduced her dosing to every other day, the secretions have increased again. We’re pretty sure it’s not a virus or cold at this point because she’s not running a fever. Once we have the bronchoscopy and surgery is complete on Wednesday, we should have a better picture and can hopefully treat the secretions more effectively.

The prospective renter that Tina was going to meet today bailed out on us. We’ve not had a lot of traffic over the last 6 weeks, and summer is coming to an end. Now is the best opportunity to rent a house, and with every day drawing closer to fall, our chances are getting slimmer. We’ll see how things pan out in the coming weeks, but for now we’re going to be patient.

Tina and I are holding up ok albeit lacking in sleep. With Ella’s congestion, she doesn’t sleep as well, plus the nurses come in to check on her through the night (administer lasix, check vitals, etc). This activity tends to disrupt our sleep, and Tina has been taking the brunt of it so I could be alive to work during the day.

On top of physical exhaustion is the emotional side of things. Being here in the hospital with Ella, and all the elements that go along with it, has been very draining. We’d love to be back home, making forward progress with our girl, but this is where we’re supposed to be.

But…

Just like we experienced in Gainesville, we see glimpses of our Lord throughout the day. Whether it be someone we meet in person that is touched by Ella’s story, an email filled with love and support, or a comment left on the blog that lifts us up in prayer. Our strength is found in these, and in knowing that our Father is in total control.

The journey has not been easy, but we know God is always right here with us.

Please pray that Tina and I can catch up on rest, and that our bodies will resist any potential colds that would love to attack us while we’re in this compromised state. And especially pray for Ella, that her congestion and secretions will be minimal and that she will gain strength and stability for surgery.

We praise our Lord every day for the amazing testimony of our little girl. She is such a blessing!

Isaiah 40:28-31 (NIV)
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

He gives strength to the weary
and increases the power of the weak.

Even youths grow tired and weary,
and young men stumble and fall;

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Ella was stable last night, and although she had a huge diaper from her Lasix (190g), it wasn’t quite enough to get her over the fluid hump. Ella’s heart rate is still elevated and her BUN this morning was 19.

After talking it over with the attending pulmonologist, she decided to giver her another round of IV Lasix this afternoon, increase her Bumex to 1.5mg twice per day, and start her on another regiment of Prednisolone.

We were hopeful that we would be discharged today, but that thought was quickly dashed once we determined our plan of attack. At this point, we’re not exactly sure when Ella will be heading home, and she may even be in here until her day of surgery.

The main reason we’re in the hospital is to stabilize Ella for her surgery on the 3rd of next month. Considering her behavior over the last few days, Tina and I are feeling more convinced that her hiatal hernia is contributing to her current condition. For this reason, we’re feeling more confident that the surgery will be a good thing for her.

As I write this, Ella is taking her afternoon nap and Tina is out running errands. It’s time for the Bun’s 3 o’ clock feed so I’m gonna go. We’ll write more as it happens.

Thanks for keeping up with us!

P.S. We did a few updates to the site over the last couple days. We’ve added a “Contact Us” page as well as a “Summary of Ella’s Journey” to the menu above. Plus the fun little Lilypie age counter.

I got home from work around 1am this morning. Tina was already asleep, and I was tasked with checking the temperature in Ella’s room and changing her diaper.

When I entered the room I was a little bummed at what I saw. Ella’s heart rate was at 135 on 2 liters of O2 and she was in a deep sleep. This is higher than we’ve seen during the last few nights.

She started coughing around 5am this morning and when I went to check on her she was real congested. Her humidifier had run out during the night, and so had the water in her oxygen concentrator. Now that she’s been on 2 liters of O2, the distilled water in her concentrator evaporates a lot quicker. Instilling the moisture back in the air helped a little with Ella’s congestion, but she was having a hard time getting comfortable. Plus, her heart rate was even higher than it was earlier, jumping around the 170 mark.

She tossed and turned for a couple more hours, then Tina got up with her around 7:30am. Ella woke up retching, was still pretty congested, and was also more fussy than normal. Tina brought her downstairs and after hooking up her pulse oximeter the numbers confirmed what we already knew…Ella’s going the wrong direction.

While still on 2 liters of O2 she was saturating between 96-98 and she was looking kind of dusky. Her heart rate was real high too, between 175 and 185 while just lying there.

This was more than we are comfortable with because there’s not much headroom above 2 liters of oxygen.

Tina called the pediatrician and he agreed that her excessive weight gain plus her current numbers were indicative of pulmonary edema. He recommended we head in to the ER….and that’s where we find ourselves now. As you can see above, the Bun and Mom are still trying to have a good tim espite the circumstances.

We’ve been in the ER for almost 5 hours. They tried to get an IV again with no success. Ella’s was wiped out from the experience (lots of crying) so she’s zonked out next to me.

We’ll update again when we know more.

UPDATE 11:00PM MST – by Josh
We’re up in our room in the hospital and Ella is sleeping soundly.

It took three more tries before they were able to place an IV. They didn’t get it the second to last time because Ella overpowered one of the nurses and moved her foot right when the catheter was being set and it pulled out. They then had to find another vein in her foot. I held her down the next time and they got it. MAN THE BUN IS A FIGHTER!!! Not that I didn’t know this but it took all I had to keep her still!

The Lasix is on board now and we’re hoping to see some of this fluid come off. Tina and I will both be spending the night in the hospital with plans to be in our own bed tomorrow night. Hopefully Ella has the same plans :-).

Please pray that the Lasix will do the trick and that we can find the right balance of meds to stabilize Ella moving forward.

Thanks for all the love and support.

Ella’s still seems about the same.

Until we can get the broncoscopy and surgery completed, we feel like we’re in a holding pattern. Ella is still requiring 2 liters of oxygen, has an elevated heart rate, is trying her best to deal with secretions via coughing and retching. We can’t try any oral food therapy. You can tell that she doesn’t feel great, so you hate to push her hard with physical therapy. Maybe the pulmonolgy appointment on Thursday will provide more insight, but we’ve been led to believe that they really need the broncoscopy to further diagnose what might be going on and how to further treat her symptoms.

We’re anxious to hear from Dr. Kays. He’s supposed to be back at work tomorrow. We just want his opinion on the proposed surgery and to see if a doctor-to-doctor consult is recommended.

The highlight of the day was Grandpa visiting and treating us to Mexican food for lunch while the Bun consumed her Alimentum. And of course, Ella resting on me was pretty cute too.

Also of note: Today was a bit of a special day. It marks the time in my life when I have now spent more time with Tina than without her. I was 17 years, 11 months, and 13 days old when I asked her to be my girlfriend. Today, Tina and I have been together 17 years, 11 months, and 14 days.

Praise God for all He does and continues to do in our lives.

Psalm 71:14
But as for me, I will always have hope;
I will praise you more and more.

Ella is continuing to require 2 liters of O2 to maintain her saturations and a manageable heart rate. She exceeded 180bpm a few times this afternoon, but she mostly hovered between 150 – 160bpm. When she was sleeping last night, her heart rate fell closer to her previous baseline of around 115bpm. It seems that her tachycardic episodes are really occurring during the times she is awake.

Ella also had a few retching episodes today. These moments have been less frequent than the week before she entered the hospital, but even a few times a day is too much in my mind.

We hope to get more insight into Ella’s respiratory issues once she has a bronchoscopy performed. We’re planning to have this done at the same time she has the surgery to repair her hiatal hernia.

Even with her elevated heart rate and increased O2, you can see by the pictures that Ella is looking and behaving ok clinically.

While Tina was out, the Bun and I enjoyed some cuddle time together and I even got her laughing pretty good with some tickling.

We also had a college friend of ours stop by to see us and our girl. Ella made a point to bake her a patty cake.

Ella’s day of surgery is looming, but still not set in stone. I’m not trying to focus on it too much until it gets here. We know that we can trust the Lord in all things. The journey we have been on over this last year leaves us no doubt. Praise God for where He has us.

James 1:2-4 (New Living Translation)
Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Yeah…that’s what I said…surgery. You can see by the look on Ella’s face she’s not too excited either.

I’ll get to that in a minute, but first let me bring ya’ll up to speed. Although I had a work project and couldn’t get to the hospital ’till midnight, I gave Tina a break so she could go home to sleep while I spent the night with Ella.

Once again the prednisolone kept Ella up pretty much all night. She was restless and woke up about every 15 minutes. She finally went to sleep around 5:00am but only for about 45 minutes or so.

Her oxygen was also weaned down to 1 liter last night, and she seamed to be tolerating it ok. She took a long 3 hour nap in the late morning and during that time her heart rate and saturations looked great. Her heart rate hovered around 105 bpm and even dipped as low as 89!

Later in the afternoon Ella started having some problems breathing. Her breaths became more labored and she started getting upset. I let the nurse know what was going on and we began to increase her O2, both in her cannulas and with blow by. Ella had a real hard time recovering but she finally did. We think we figured the cause of this one though. We believe that Ella’s O2 is being weaned too fast.

When she was on a liter of O2, her saturations hovered in the mid 90’s but would dip into the low 90’s as well. When this would happen her body would try and compensate by working harder to maintain the higher saturation. By the afternoon, she was just worn out which caused her to spiral down. We know Ella likes to take her time with things, so moving forward we will be weaning her slooowly so we don’t encounter this again.

Also, Ella had her swallow study done. It wasn’t real bad, but it wasn’t perfect either. The good news is that she is not aspirating immediately when she swallows, but her timing is off enough to where the food is being stopped by her vocal cords and muscles in her throat instead of the epiglottis. We’ll find out in the coming days the recommended approach for giving her food and drink orally.

Ella had an EKG done this evening just as a precautionary measure because her heart rate monitor kept throwing these weird alerts. The doc didn’t think she was actually experiencing them, but just to be on the safe side, she wanted a test done.

The big news of the day though relates to the upper GI study they did the other day. If you remember, the technician told Tina that everything looked ok. But after the radiologist studied the images in detail, it looks as though Ella’s nissen has pushed past her diaphragm and is up in her chest area. This is the most likely cause for her increased retching when she drinks or starts to cough because it’s pressing against her esophagus.

Repairing this will require surgery…something we’re really not excited about to say the least. We still have not talked about all the details with the surgery team, and we’re also waiting to get a consult from Dr. Kays before we do anything. The earliest the surgery would even take place would be the middle of next week, but we’ll just have to see. I just know that with all of Ella’s history, no surgery is going to be very straightforward.

Even with all this, Ella is taking it in stride. She’s seems to be feeling better tonight, even acting more like herself.

Please pray for our girl in the coming days and for wisdom so that path is made clear for the doctors and in our decisions.

Praise God for this sweet little Bun.

We had a bit of an early morning scare with Ella today. Something woke me up around 2:30am this morning, and I decided to go check on Ella. Her heart rate was fluctuating between 145 and 155 bpm and she wasn’t saturating that well (upper 80’s, low 90’s). She also felt a bit warm to me.

Normally I would go wake Tina up and get her thoughts, but because I tend to overreact in these kind of situations, I decided that it wasn’t critical enough to justify waking her up. I continued to check on Ella for about an hour, and then finally fell back to sleep.

Tina went in to check on her around 6:15am and I could hear Ella in the monitor. She began to cough, and then she began retching. It sounded like she couldn’t catch her breath, and then she started getting real upset. I went into the room to see if I could help Tina.

I immediately became alarmed because her heart rate was over 200bpm! We’ve seen her do this before while she was in the hospital, but not since we’ve been home. My anxiety was compounded by the lack of sleep so what started as good intentions to help Tina, turned into Tina having to take care of another upset individual.

Of course I was thinking worse case scenario at this point, even invisioning her just having a heart attack or something. I was also feeling guilty because maybe I should have done more earlier that morning.

Well, after Tina calmed Ella down a bit, and talked me out of rushing her to the Children’s Hospital, she reminded me of something I had thought of, but had since forgotten.

Ella did have her vaccinations about a week ago, and I thought this might play a part, but previously she would spike a temp within 48 hours or so. Tina then told me that the doc said we might see this happen in a week or two. Ahhhh….maybe that is what’s going on.

I went down to the kitchen to get some Tylenol for Ella. We gave her one dose then and another a few hours later. By noon her fever had broke.

We all got out of the house today and ran some errands around town and did some repairs on our rental properties.

So my scare this morning reminded me of last year when Ella was still very sick in the NICU. Man…talk about perspective. As you can see from the picture above, it’s still a very long way from where she used to be.

Praise God we have our little girl here to love. She is such a miracle.

Here’s some photos from Ella’s celebration yesterday. We’ve also included a little video of her while Tina reads one of her favorite books plus a couple pictures from today.

P.S. This post marks our 500th entry in Ella’s blog. Wow…that’s a lotta posts =).

UPDATE 3:00 PM (MST)

For those of you who missed out on the live broadcast at 2:20 pm, here’s the recording of Ella’s celebration. The action really starts 6 minutes into the video, so you can drag the slider to that point, unless you want to hear me and Tina’s dad talking on the phone. =)

UPDATE 2:20 PM (MST)

Heya Ella Fans…we’re going to try a last minute live broadcast of the Bun’s Birthday Celebration. You can view the video below by typing in the password: ella

The video will be muted initially but we’ll turn it up once we start singing Happy Birthday =).

You can also join the live chat below the video as well.

(uStream Chat)

02:28 ustreamer-22706 : Happy Birthday Ella!!! Love Matthew and Melinda
02:30 ustreamer-92442 : Hi Baby Ella. Happy Birthday.
02:32 ustreamer-92442 : Love watching this beautiful video.
02:35 ustreamer-32845 : hello this is angie from nc,happy birthday ella
02:43 ustreamer-33415 : Hi, watching from Frostproof, FL.
02:44 ustreamer-33415 : Linda Casey from Frostproof, FL.
02:46 ustreamer-32845 : hi ella,tina,josh,grandma,and grandpa,we love you ella
03:01 Jooosh : Thanks all
03:18 ustreamer-6774 : happy birthday ella from north carolina you are amazing