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.

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.

Thank God for IV Lasix. Ella’s labs came back this morning and her BUN was 24, even a touch more dry than the day before.

Even the resident that has been on shift this entire week could not believe the change in her. He witnessed our argument with the doctor the other day and was happy to see that the IV Lasix is working. The doctor from the other day never came around (he still seemed indifferent towards us on Friday), but that’s okay. He will not be on service anytime during the rest of this hospital stay.

When the nurses came in to give the IV Lasix at 2am, the catheter in the IV was kinked and barely viable. So, they had to hold her foot in a certain position and push the Lasix manually. It was the same routine this morning at 10am. By the time her dose for 6pm came up, the IV had gone bad.

Now we had a decision to make. Do we try for another IV and continue to give Lasix? or do we hold off and see what happens? Even yet, do we try another combination of diuretics? We opted to go for another IV again. Since we still had 4-5 days before surgery and she is doing so much better, we want to try and keep her dry and not lose the ground we gained in the last 2 days.

So, our nurse located someone from the flight team to try for the IV, and she tried two different locations without any luck. As 7pm rolled around, it was shift change. It was Saturday night, so we found Barb again (she was successful in placing Ella’s IV last Saturday night). And sure enough, success. Although this time, instead of her foot, it is in her left hand. Barb couldn’t believe how well Ella did with the IV process this time. She still fought the process but maintained and self-soothed a lot quicker. The difference: her BUN was 16 last week and she felt crummy. Today, her BUN was 24 and she was feeling much better. We aren’t usually proactively placing an IV when she is feeling better, so it was interesting to see how much that played a part in her behavior.

We dosed her IV lasix at 8pm tonight and she will get it again at 2am. Since we placed the IV late tonight, they drew labs again and told us we could skip labs tomorrow morning. Yeah, one day of no poking. That will be a nice break for the Bun.

Grandpa brought lunch for us today and stopped by for a quick visit. It was so good to see him. Although this was his first visit to see Ella during this hospital stay, he could tell that she was feeling better.

We have a potential renter viewing our rental home tomorrow. We’re still waiting on Him for the right renters; trying to be patient.

We’re hoping that the IV Lasix will continue to have its magic effect and that Ella will continue to stay dry and maybe even get a touch more dry as we enter into next week for surgery. Praying now for continued health, strength and restoration for Ella.

Also, please pray that the Lord will provide strength for me and Josh – – that He will prepare our hearts and minds for the emotional experience ahead of us.

Psalm 95:6-8
Come, let us worship and bow down.
Let us kneel before the Lord our maker,
for he is our God.
We are the people he watches over,
the flock under his care.

We did not go to bed until 2am and managed to get a few hours of solid sleep. Ella was up a few times when the nurse would arrive for vital signs and/or to administer the IV Lasix. So it wasn’t the best sleep, but we’re hoping for much more tonight.

We were looking for 3 things to see if she was getting more dry: clinical signs, her urine output and weight.

Clinically speaking, Ella seemed like she might be getting more dry. She seemed a little less congested and a bit more comfortable. The nurse this morning was fantastic – – she went and found the right person to stick Ella; it happened on the first try. Her labs came back with a BUN of 22 (they were 18 yesterday). Finally, she lost a good amount of weight which is the first time since admission. She went from 7.67 kilos down to 7.43 kilos.

Consistent with her history, this means that the IV Lasix is an effective tool to get the fluid off Ella. We’re glad that we pushed for it yesterday, even though we received an indifferent disposition from the doctor. This time, they delivered 2 mg per kilogram per day of IV Lasix and that seemed to have the effect we want. We think that she might need another 24 hour period of the IV Lasix before she is at the optimal point for her before surgery.

We hope the IV can remain viable. That is always a challenge for Ella. This evening, we may have lost it. Fortunately, it seemed like the positioning of the catheter. We’re hoping that there will not be a problem when we go to administer the 2am dose of IV Lasix. Also, we hope to see her BUN higher from her labs in the morning along with a bit more weight loss. The dryness in her lungs will help the secretions to simmer down, lessening her overall congestion and allow for ease of breathing and lower heart rate.

Today is the first day that Ella is not getting prednisolone. She was on a 5 day course of the steroids and now, is getting the dosage every other day until surgery. Hopefully, that dosage schedule is enough to maintain her until surgery.

My heart leaped this afternoon when I heard my email notifier on my MacBook. I looked down and noted that Dr. Partrick replied to my email that I sent earlier in the week:

Hello Mrs. West, Just wanted to let you know I did talk with Dr. Kays in Florida today. As you know, he remembers Ella well. We reviewed in detail Ella’s studies and her operative history out there. I now have a better understanding of her anatomy after the CDH repair, and can plan accordingly for the OR here next week. I will also plan on sending Dr. Kays a copy of my operative note from here. I will try and touch bases with you this coming Monday (when I am on call) or Tuesday before the surgery Wednesday. Have a good weekend!!

Although we know that the Lord will be watching over the entire procedure, it just made us feel good that our new Denver surgeon took the time to have a consult with Dr. Kays. And that Dr. Kays took the time to advise on Ella’s history.

We’ll see if tomorrow brings a more dry Bun. That’s what we would like to see. It’s a bummer that we have to spend the holiday weekend in the hospital. But we’re so thankful for Ella Renae.

We’re doing our best to focus on Him as we head into surgery week. Hanging onto words that embody the truth.

Colossians 1:9-14
For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding. And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.

Although Ella woke up a few times, we did get sleep last night. Thank God for the air mattresses – – that made all the difference.

I’m so glad we caught a little shut eye. I think it helped considering we had a rough morning. Ella was really congested and we could just tell that she was not getting better. The PO Lasix (oral form) did not make a difference and we were ready to let them know that we were not interested in testing it any more at this stage.

The pulmonary team has been treating her fluid issue from a chronic, long term management perspective. This is really important, however with surgery looming in the coming days as well as a holiday weekend where medical professionals are limited, we want to switch to acute mode. We know Ella needs to get more dry and we want to start to see her condition improve. I don’t think that is too much to ask considering that we have been here since last Saturday and her condition has not changed much.

The pulmonary doctors have admitted that the combination of diuretics that might work right now to manage her fluid might change after surgery because they think that the hiatal hernia is a major contributor to her overall issues. The doctor came in to do rounds this morning and discussed wanting to continue the PO Lasix, maybe just increasing the dosage. Since we have so much experience with PO Lasix not working, we tried to explain that we were not comfortable with that course of treatment. We want to use something that we know works – – and right now – – that is IV Lasix.

The pulmonologist is not convinced that IV Lasix works and tried to sell us on PO Lasix. When he was not able to convince us, it became very apparent that he was frustrated. Unfortunately, he started to show attitude, not something you expect from a professional. I don’t think he is used to a collaborative method where parents are so involved in the decision-making process. I don’t think he wants to have to sell his ideas and the reason why he wants to take a certain course of action. Or if he does, he is not used to parents that are armed with information and challenge him to further explain when things don’t seem to line up.

Here’s the hard part: this is a great doctor and I want to rely on his expertise. He has vast medical knowledge. We have extensive knowledge when it comes to our daughter and what works for her. A great doctor is able to take both perspectives and come up with a good plan of action, so all parties feel good about the next moves. It seems like we were able to do that over the past few days, but then, Josh and I were not being very aggressive. We were trying to give him the freedom to treat as he saw fit. We became more aggressive today when we have been here since last Saturday and she is not showing signs of marked improvement.

It was hard for me. I was offended by his attitude and how he patronized us. In the end, it doesn’t matter. But I’m certainly not looking to make enemies at the hospital either. I don’t like the tension. This happens every once in a while with doctors and nurses. They don’t appreciate that we are so involved and are armed with knowledge. We question and ask and need to be convinced that a course of treatment is the best for Ella. If it doesn’t make sense, we want a better understanding. This adds more work to their job of practicing medicine.

So once the meeting was complete, we convinced him that we want another IV in Ella, so she could get IV Lasix. If we are going to stick with Lasix and try it, we want to give her IV Lasix so it will be more fast acting. And trust me, that was a hard decision. Most of you know what a tough stick Ella can be and how getting an IV can be really exhausting and take several attempts.

Our nurse helped us find a good stick. Her name was Stephanie from the flight team. She tried once in Ella’s hand which was unsuccessful. So she moved to her left foot which is already bruised from other attempts as well as the last two IV sites. But Stephanie was able to get an IV – – Praise God. She is now on our preferred list.

The labs came back from when they did the IV. Her BUN was 18, so basically the same this whole week (it has fluctuated between 16-19 since a week ago when we went to the pulmonology clinic appointment).

While Ella’s IV was being placed, Josh went to meet a good friend who was in the lobby to visit us at the hospital. We’ve missed him so much. Although Josh sees him on a semi-regular basis, I had not seen him in well over a year. It was so nice to reconnect, get a strong hug and feel the love from a brother in Christ. It was neat for him to meet Ella in person since he and his entire family have prayed so much for her over the past months.

So, after lots of arguing with doctors, they gave her a dose of IV Lasix (twice as strong as the dose over this past weekend; 2mg, per kilo). Her first dose was at 11am and she had a diaper of 215. The second dose was at 6pm and her diapers right after totaled 115. She is due for another dose at 2am. So, her urine output has been good so far, but the other test comes in the morning. Does her BUN show that she is getting drier? And does she have any weight loss? She has not had any significant weight loss this entire hospital stay.

Also, the doctor ordered a Nephrology consult to get their opinion on the Lasix. According to the nephrologist, he did not think Lasix will work at all. Because it is another loop diuretic and she is already on the highest dose of Bumex (which is 40x stronger than Lasix), there is no indication that Lasix should make any difference, whether delivered PO or IV. And although Bumex works, we can’t give more because Ella is already at the limit for her weight and any more of the same drug could be toxic.

If we go to tomorrow morning and IV Lasix does not work either, then we will have to reconvene and figure out another way to get her to dry out. We wanted to try the IV Lasix because it has always worked before in the past. The only other option will be to use a completely different type of diuretic. The bummer is that other types of diuretics tend to have higher risk of side effects. We were trying to avoid trying anything new in Ella’s system since 1) it will be the weekend and harder to adjust with the weekend staff and 2) may not work at all and 3) might cause issues. But if things don’t show improvement in the morning, we may not have a choice.

The nephrologist also recommended getting a renal ultrasound to check Ella’s kidneys. They did this once in the NICU, but her kidneys have not been checked recently. With all the massive amounts of diuretics in her system, we want to make sure that we are keeping on top of her kidney status. We went down at 3:15pm and Ella loved getting out of her room and checking things out around the hospital. We’re hoping to hear the status of the renal ultrasound tomorrow.

One of Ella’s CDH friends named Cayden has reherniated and is having diaphragm repair surgery tomorrow. As you know, this is a major surgery. Please lift him up in prayer that the surgery will be successful and he will have a short recovery. Also, there are a few other CDH babies that are on ECMO right now fighting for their little lives. Please pray for these babies and their parents, that God will give them strength to sustain.

Please pray for Ella to have a restful night and for us to have a clear answer on her latest diuretic challenge. We would love for the IV Lasix to make a difference. But if it does not make a difference, that the Lord will provide wisdom on the next best steps for our baby girl. And for me and Josh, that He will continue to provide us with a peace that only He can provide.

Galatians 5:22-23
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

Today was the tipping point where Ella started to do a bit worse clinically. Fortunately, the doctors took note too.

This means that the increase in Bumex to 1.5mg twice per day, is not doing the trick to keep her dry. Her BUN yesterday was 19; it has not gotten better. And if anything, she sounds more wet today.

It started with 2:30am wake up call. Ella was having so many secretions that it was tough for her to breathe. Finally after suctioning her, she was able to go back to sleep. The trend continued the entire day where she required suctioning multiple times. Each time was a major episode where she desaturated and required blow by oxygen. She HATES being suctioned and literally turns her purple-blue color.

She was coughing a lot too and you could just hear her congestion and overall challenge with breathing. It was a tough day for me and Josh. It is so hard to watch her be miserable and not be able to do anything to help her. When you are around it constantly, it starts to wear on your emotions.

The plan today was to give her an increase in diuretics. I proposed giving an extra dose of Bumex. But we found out that she is already at the max dosage for her weight. She doesn’t have an IV right now, so we can’t give IV Lasix. The pulmonologist, Dr. Wagner suggested an oral dose of Lasix. As we have explained to multiple professionals at the hospital, Ella does not tend to respond to Lasix given orally.

For those of you that have followed our story for months, Dr. Kays had a tough time transitioning her from IV Lasix to oral Lasix back in the NICU. It was one of the mysteries that kept her in the NICU. Her body never responded the way we needed it to when administering Lasix orally. Since Bumex is also a loop diuretic and is 40x stronger than Lasix, we switched and started giving her that one. And once we left the NICU, we had to go back to the hospital 4 days later since we didn’t even have the perfect dosage of Bumex. This is a classic issue for Ella and the dosage can change as she grows, gains weight and her volume of fluid/food changes. It is a constant balancing act.

In any case, Dr. Wagner stated that the reason Lasix orally did not work for Ella is because likely it was underdosed. Most commonly, hospitals or doctors will double the dose. Apparently, even doubling the dose does not have the same impact as IV Lasix. The true conversion is 7x, but he admitted most medical professionals are not comfortable increasing it that much because it sounds like it is too much. In that vein, he recommended giving her a 4x concentration amount. Although we had this sense that it would likely not work, we conceded. There are times when we can tell them something about Ella that we believe to be true. The reality: we might be incorrect or as long as it is not harmful to Ella, it is better to let them try and learn by their own experience rather than parents trying to convince medical professionals of a truth about our baby girl.

Finally, it was 3pm and we had not heard anything about receiving the dose of oral Lasix. Keep in mind that we have had multiple episodes with Ella today and she is having a tough time. So the sooner we can get the oral Lasix experiment started, the better she might feel. She always responds better when she dries out.

When we went to inquire, we learned that they wanted to give her the 4x concentration of oral Lasix, but wanted to space it out into two doses. This is where we decided to put on foot down on the issue. Our prior experience has shown that Ella does better with a blast of diuretic, a strong dose. This is one of the reasons that IV Lasix probably works well. It sends the message loud and clear to her kidneys to clear out.

After talking it over, we convinced them to at least try and place the 4x concentration into one dose and not 2 doses spread out. Again, if we already have experience showing that 2x concentration is not enough, why do the exact same thing and not gain any ground? Ella is not feeling well and we need to take steps in the right direction. This is especially important over the next 2 days. The weekends are always tougher to get clear direction and decisions for care.

We tried the dose of oral Lasix on an empty stomach to help improve its effectiveness (again, based on what we already know with Ella), and she only peed a total of 135 between 4:20pm – 9pm. We had a feeling that it would not give us a huge jump. Her urine output is evidence of it. The only last chance of it being effective: does it give a boost to the effectiveness of Bumex? Not likely. If it turns out that it is not shown to make a huge difference, we’re hoping that they believe us from this point forward on the use of oral Lasix.

We have noticed that the steroids have helped when she is asleep. She will saturate 100 and have a heart rate of 115, which is definitely promising. I just wish that she was not still on 2 liters. And of course, as soon as she wakes up, she has all kinds of issues breathing.

The other reality: the doctors can’t differentiate her symptoms. It is tough to tell how much of this scenario is being caused by the hiatal hernia. They don’t feel that they will have an accurate picture until after surgery. Maybe this hiatal hernia is just causing more respiratory problems than we think.

We still think that regardless of the surgery, that she is too wet. Her symptoms line up with what we have seen multiple times. But time will tell the true story.

We are not sure what the plan of attack will be tomorrow. We are going to request that we no longer try oral Lasix. Since we have hit the maximum on Bumex, there is a different diuretic that they can try (tends to cause more electrolyte problems) or we can try for another IV and give more Lasix. Even though IV placement is horrible, I think we are leaning more towards that solution simply because we know it will work. It is scary to introduce another diuretic into the whole mix. The other reality: they could limit her intake of food for this time which they have not done up till now. It is not a perfect long term solution but in the short term, it could help dry her out in preparation for surgery and they could reassess post surgery.

Josh ran home to go into our crawl space and grab a blow up mattress. We’re not sure if they still work, but we have to try something different. Sleep the past four nights has been rough since they do not have a good set up for 2 parents to sleep in the room. We’re hopeful that one of the air mattresses will work, so we can catch some good sleep tonight. We need it badly!

Please pray that Ella will feel better (today was a rough day for her and her parents) and that the doctors will be given wisdom and insight to know the next best steps. Also, that we can catch much needed sleep tonight in our hospital room (all three of us). And as always, that we will continue to seek Him and His will for our lives. We’re not sure what He has planned or what all of this means, but we desire to trust Him and rest in the truth that His plan is always best.

Proverbs 16:20
Whoever gives heed to instruction prospers,
and blessed is he who trusts in the LORD.

It’s been a long day.

Ella is stable. We had a blood draw this morning. They sent James Brown (yes, that is his real name), who is known for his abilities, to draw labs from Ella. He tried in her foot once and noted that her veins would not cooperate well. So, he located a spot on her head and drew the blood from there. It was hard to watch but ended up being over and done fairly quickly, and without too much torture to Ella.

Her labs came back and her BUN is 19, the same as Sunday. So, we have not made much improvement over the past 2 days. The steroids are helping to lower her heart rate. But, she even had a slight weight gain this morning. This means that she is still fluid overloaded. We are not seeing the low heart rate and lower breathing effort like we did during the last hospital visit, but she isn’t as dried out either.

We are going to discuss with the morning doctors the best plan of attack. They do not have IV access, so Lasix is no longer an option. I suggested that maybe we try and incremental dose of Bumex instead of Lasix to see how much that impacts the scenario.

Since we do not have IV access plus she is getting ready for surgery, we also discussed the idea of a picc line (a peripherally inserted central catheter). This might be a solution to getting labs, inserting Lasix or any other meds directly into her bloodstream without having to poke her each time.

Cardiology came to do an echocardiogram today. They want to make sure that the pulmonary hypertension isn’t acting up and playing into her current status. We should have the results tomorrow.

In the bigger picture, Ella is much improved from Saturday when we brought her to the hospital. But clearly, she is still having some respiratory compromise.

Keep the prayers coming that the doctors can take the right steps in the next few days to get her stronger in preparation for surgery.

Thanks to all of you for the support and encouragement.

Isaiah 26:3-4 (New Living Translation)

You will keep in perfect peace
all who trust in you,
all whose thoughts are fixed on you!

Trust in the Lord always,
for the Lord God is the eternal Rock.

Yes, we are joking, but the views are really nice. This room is facing west towards the mountains. The hospital tower next to us is blocking the downtown Denver high rise buildings; that might be the only downside to the near-perfect view. This room is also a tad bit bigger than the last one. Since we are going to be at this hospital so much over the years, we just thought it would be cool if we could reserve one in advance.

The Democratic National Convention is being held in downtown Denver this week. The benefit for us is that Josh is allowed to telecommute this week (too much traffic and potential chaos near his office). This was unforeseen timing, but a nice perk. They have amazing internet speeds at the hospital and a built-in desk in the room. He sits off to the side with his headphones attached and works away. When it is time for a break, it just makes the hospital stay so much easier with two of us to always watch Ella.

Ella did pretty well overnight. She only woke up 3-4 times, which is better than the last time she took steroids. Although they think that since only 12 hours had passed, the steroids did not have a chance to take full effect. We’re expecting that tonight might be a bit more restless, but hoping for the best.

When I ran errands yesterday, they decided to do another blood draw. They told me it was scheduled for 6pm, so I made sure I would be back by that time. Instead, they showed up at 5pm and Josh was left to support Ella through it on his own. And trust me, these episodes are really tough. Ella cries and screams her loudest, tries to break free, turns blue/purple with eyes darting around. The pulse oximeter alarm beeps from lack of oxygen and a high heart rate. Blow-by oxygen is a must for her. By the end, she is soaking wet from sweat. It requires 4 people to be successful. She is so strong that you need one person drawing the blood, one helper to hand things, one to just hold her, and me or Josh to console her and hold the blow-by oxygen. It is crazy and even if the episodes only last for 5 minutes, it feels like it is so much longer.

Apparently, the draw last night was another heel prick. This was the second heel prick for the day, same heel (the other foot had her IV with the go-go boot already). They were not successful getting it right away either, so they were having to prick more than once. Ella got so upset and so worked up. Heel pricks sound like a good idea because 1) they are less invasive and 2) Ella’s veins hardly cooperate for an arterial blood draw. But, the downside is that the blood can hemolyze which means that the hemoglobin has been liberated from the red blood cells. So, the red blood cells are destroyed in such a manner that hemoglobin is liberated into the medium in which the cells are suspended. This is the biggest risk with the heel or finger prick blood-drawing technique.

This is the second time that they have done a heel prick while we have been in-patient at the hospital and her blood hemolyzed, so none of the numbers we needed were available. Basically, it was all done in vain (no pun intended). This is why when we go to the outpatient lab, I always ask for an arterial blood draw, even though it is tricky. If we are going to put Ella through the trauma, I want to make sure that it is getting us the information that we need to manage her care. But since it took 4 painful episodes to get an IV the night before and the heel prick worked yesterday morning, they made the decision to heel prick. Yesterday’s episode just further confirmed that heel or finger pricks for Ella are not a good idea and we should avoid them.

The IV in Ella’s left foot decided to not be viable when the nurse flushed it this afternoon. So, they went ahead and took it out. Ella was glad to get her foot back albeit bruised. The one bummer: the nurse thought she held Ella’s foot long enough with sufficient pressure to stop the bleeding. She put on a band aid and left the room. Ella was crying, so I picked her up to console her. When I set her back in the bed, blood was everywhere! This is when it helps to have another person around. I yelled for Josh’s help, and he applied pressure to her foot with a paper towel, while I hit the call button and tried to prevent blood from getting all over our personal belongings! It ended up all over my shirt, the floor, her bed, her blanket, etc. Thankfully, I had an extra shirt handy and hydrogen peroxide is a fabulous chemical for the removal of blood on clothing!

Overall, Ella is heading the right direction but it is just slow. Last time, it does seem like she dried out quicker. So, I’m not sure. We are supposed to have a blood draw at 8:30am tomorrow morning and once those come back, we’ll see how she is doing from a dryness stand point. Her overall weight has decreased a little, but not significantly. Her urine output has picked up. Just her diapers from 11:45pm last night till 3:30pm have been 705 total. That is good considering that she intakes 800ccs of formula plus 240ccs of water each day. I think today was the first 24 hour period where her output was slightly negative (output a bit more than she took in). Plus, she seemed like she was feeling a little bit better than yesterday.

Her heart rate and saturation seem a little bit reduced while she is awake, but right now she is taking an afternoon snooze and she is 100% saturated and heart rate is 110. That is a huge change from a few days ago before we came to the hospital. It is also more like her baseline, but again, she is on 2 liters of oxygen.

Their thought, unless she does a major turn around, might be to leave her in the hospital until her day of surgery. Since they do not know if her increased dose of Bumex is enough to sustain her from a dryness standpoint and they want to make sure she is not compromised in anyway or starting to head in a bad direction, they feel it may be the safest option.

This means staying here for another week, and then wheeling her to the OR on Wednesday, Sept 3rd for her surgery and bronchoscopy. Following the surgery, she will likely need to stay for another week or so to recover. Thus, the light-hearted joke about a timeshare.

Back to being serious, we are still just waiting on Him. Slowly but surely, things are coming to fruition. He has confirmed that Ella needs surgery and that it needs to happen in Denver. Even though we do not enjoy living at the hospital, we agree that it is the best and safest option, especially with her upcoming surgery in 8 days. We’re asking Him to prepare Ella’s body for her surgery, for wisdom for all the doctors involved in her care now and at surgery, and for Him to prepare our hearts for the next couple of weeks.

I realize that the scripture below might seem long, but I think it truly gives encouragement and hope in these times.

2 Corinthians 1 (The Message: The Bible in Contemporary Language)
I, Paul, have been sent on a special mission by the Messiah, Jesus, planned by God himself. I write this to God’s congregation in Corinth, and to believers all over Achaia province. May all the gifts and benefits that come from God our Father and the Master, Jesus Christ, be yours! Timothy, someone you know and trust, joins me in this greeting.

Now that the worst is over, we’re pleased we can report that we’ve come out of this with conscience and faith intact, and can face the world—and even more importantly, face you with our heads held high. But it wasn’t by any fancy footwork on our part. It was God who kept us focused on him, uncompromised. Don’t try to read between the lines or look for hidden meanings in this letter. We’re writing plain, unembellished truth, hoping that you’ll now see the whole picture as well as you’ve seen some of the details. We want you to be as proud of us as we are of you when we stand together before our Master Jesus.

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 had a rough night. She woke up several times, sometimes just crying while other times coughing and retching. Normally, she is quiet for several hours and we do not hear a peep from her (sometimes her pulse oximeter alarms, but she doesn’t wake up).

In any case, it made for a rough night for all three of us. I’m so glad it is the weekend so we can all catch up on our zzz’s.

Ella coughed and retched so much this morning. Seriously, like 30 times by 9:30am; it was ridiculous. I sure hope that surgery and follow-up treatment helps.

Because of the retching and lack of sleep, we canceled the PT session this morning and rescheduled for Monday morning.

I am concerned about her fluid retention. I left a message for Dr. Perry so we could touch base, but he did not return my call.

Also, I called Dr. Partrick’s office to see about a surgical consult with Dr. Kays. His assistant did not call me back either! I’m just striking out.

It was a nice day in Denver and I needed to go to the bank to use the drive-up ATM and drop off one of Ella’s compound prescriptions. So, we got in the car and ventured out into the world for a little bit this afternoon. Man, the large portable oxygen tank sure runs out quick when she is on 2 liters.

Ella continued her talking today. I had to capture it by video, so we could share her new “duh, duh” with all of you!

Many of you have sent letters for Ella’s timecapsule which we will be sealing up in a couple of days. Thanks so much for taking the time and effort to send those letters to Ella. I know that she will be in awe some day when she reads them.

Ella normally naps for an hour or so and I wake her up around 8pm, so she can stay awake for a couple more hours. But I have tried countless times to wake her up, and she will not wake up!!! I even sat her up in her chair. She didn’t even have the energy to fuss or complain. She is fast asleep.

I’m hoping that she is just making up for those lost hours last night and doesn’t decide to wake up at 5am.

Josh is working late tonight, so its just me and the Bun putting on our pj’s and getting ready to ride into the weekend.