Sep
15
    
Posted (Tina) in All Posts on September-15-2007


About 4:00pm today, the resident on-call, Dr. Caban, came to replace Ella’s right chest tube. We have not spoken to Dr. Kays, so we are not sure about his thinking on just replacing the right chest tube.

We called in tonight to check on her and she went through the chest tube replacement procedure fine. Dr. Caban removed the existing right chest tube and inserted a new chest tube on the right side of her chest.

Approximately 6 hours later, Ella’s chest fluid output had increased dramatically. Already her right chest tube has output 59 and her left chest tube has output 18, for a total of 87. This is good news!

The nurse tonight mentioned that Ella was awake for her and seemed comfortable (not fussy). This is the same nurse that took care of her last night, so that is good that she can tell a difference.

Ella’s last blood gas at 8pm was cO2=64, pO2=74. She will have another one performed at 4am.

We will wait and see how she does overnight and into tomorrow morning. Please pray for her chest fluid to continue to flow out of her chest cavity, for the fluid issue to resolve completely and for Ella’s strength to be increased as each day passes.

Psalm 27:14
14 Wait for the LORD;
be strong and take heart
and wait for the LORD.



 
Sep
16
    
Posted (Tina) in All Posts on September-16-2007

Ella is doing better this morning.

Her blood gas at 4am was co2=58, pO2=108. This is much, much better and in the right direction. Praise God!

Also, her chest tubes have been draining. Her total for yesterday was 134; the right was 98 and the left was 36. Keep in mind that this was not even for a 24 hour period – – it was for a total of 14 hours.

When we called, the nurse stated that she is not as fussy – – she is convinced that Ella is feeling much better since those chest tubes have drained.

Throughout the morning, Ella has been awake, looking around and watching the monkey hanging from her bed.

Thank you Lord for progress in the right direction. We praise you for this baby girl and trust that she will be healed in your timing.

Deuteronomy 32:3-5
3 I will proclaim the name of the LORD.
Oh, praise the greatness of our God!

4 He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.



 
Sep
16
    
Posted (jooosh) in All Posts on September-16-2007

…but her mom and dad snuck off to a Bed & Breakfast yesterday. It was a last minute deal, but Tina and I decided to escape the Gator fever.
 
We found a place right off the Atlantic coast out in Flagler. It’s a two hour drive from Gainesville and we headed out right after we saw Ella in the afternoon. Timed it just right too, because we missed all the football traffic. =)
 
It was a nice drive. Felt so good just to see some different scenery. I was beginning to feel like we had been living on an island for the last eight weeks, so it was nice to confirm that we weren’t.
 
We arrived at the B&B around 7:30pm, just when the sun was setting. We checked in, and headed down to the boardwalk and walked to a restaurant. Dinner was a bit disappointing, but the walk back to the B&B wasn’t.
 
There was a monster thunderstorm* right out over the ocean. Something you rarely see out in Southern California, but I’m sure it’s a regular event here. It was awesome. A gorgeous clear night, with the waves crashing, stars out above us, and lightening flashing in the distance. What an incredible display of God’s creation. We took our time walking back, barefoot on the beach, and just soaked in the moment.
 
The next morning, after breakfast, we headed north on highway 1 to St. Augustine. What a quaint town. A lot of history too considering it’s the oldest city in the country. We walked around looking at all the different shops and historic buildings.
 
We were then lured into Pizza Time, a NY style pizza place, where we enjoyed the best pizza we had ever had! Seriously, pizza is my favorite food, and I tend to be picky about it (not that I’ve ever turned down a slice ;-)), but this pie was absolutely tasty. If you’re ever is St. Augustine, you gotta give it a try.
 
After lunch, we walked around a bit more and took in the scenery. We then decided to head back to good ol’ Gainesville and check up on our baby girl.
 

 
Ella had a good day overall. She has been a lot more comfortable since they replaced her right chest tube yesterday. Her stats are looking better. Her blood gases at noon were: cO2=57, pO2=107. Her pO2 was down a bit this evening at 8pm (68), but Michelle thinks this was attributed to an excess of secretions in her chest at the time.
 
She’s only had 23cc of chest fluid output for the day. We like this to be more because her chest x-ray is still showing up hazy, indicating a fair amount of fluid. On the positive side, Ella’s urine output has increased significantly. We hope this is related to the additional diuretics she’s received and that it keeps up. This is the right way for her body to process excess fluids instead of relying on chest tubes.
 
Ella is in good hands tonight with nurse Michelle. We’re able to rest easier knowing that the nurse on duty truly cares for our baby girl.
 
Please continue to pray for Ella’s fluid issue. We are trusting our Lord that in His time and in His way, He will take care of it. This has been an incredible process, of learning to give over to God the things we cannot control. It can be very emotional, and there’s no reason that it shouldn’t be! But there is an incredible rainfall of peace when we put our trust in Jesus.
 
Heavenly Father, we praise your for your promises that you deliver through your Holy Word. Continue to write on our hearts, these words you have instilled in our minds. Praise you Lord for your peace, grace, mercy, and sovereignty in all things. You are Almighty God, and we surrender to you, praying that you may be glorified through all these circumstances. It is in Jesus name that we ask these things. Amen.
 
 
*Below is a slideshow and a short video of a lightening strike we saw on the beach last night. There are a total of 23 separate frames that make up the slideshow. It really shows how incredible the strike was, and how much occurs in less than a second!. Wow..wow…WOW!

 



 
Sep
17
    
Posted (jooosh) in All Posts on September-17-2007


Our little bun had a pretty good night. Her stats were stable and she behaved herself.

Dr. Kays called this morning to bring us up to date. He confirmed that she is making forward progress, albeit slowly. He wanted to replace the right chest tube again in the hopes of draining more fluid.

I asked if this will be our course for now, and he confirmed that it’s one of two options. We either continue what we have been doing, using the chest tubes to drain her fluid and wait on the body to get better, or pursue more aggressive steps with surgery.

As much as we would like to see her get better quickly (Dr. Kays would like this too!), we’re content to be patient and let Ella’s body do what it needs to do. She is taking baby steps forward again, and it’s evident in her latest chest x-ray as well.

Dr. Kays also indicated that he might discontinue her subcutaneous (anti-coagulation) shots in the next few days. We’re all for her not getting shots, so this would be good news.

We followed up again with a call to the nurse this afternoon and the chest tube replacement went well. Ella has drained another 32cc from her right side. Her blood gas this afternoon looked good too (cO2=57, pO2=118).

Ella is now getting a continuous feed of Portagen into her stomach (1cc / hour), up from 1cc every three hours. This is good news too because he feels this is not contributing to her fluid issue, and she’s tolerated the digestion process well.

Tina and I will be heading in this evening after work to see our baby girl. Nurse Michelle is on tonight which makes for a good time as well.

A passage of Scripture that spoke to Tina and I this morning while listening to a message from Charles Stanley:

Isaiah 41:9-13

9 I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.

10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

11 “All who rage against you
will surely be ashamed and disgraced;
those who oppose you
will be as nothing and perish.

12 Though you search for your enemies,
you will not find them.
Those who wage war against you
will be as nothing at all.

13 For I am the LORD, your God,
who takes hold of your right hand
and says to you, Do not fear;
I will help you.



 
Sep
17
    
Posted (Tina) in All Posts on September-17-2007


Ella had a good day and was awake tonight for our visit. It was so nice to see her looking around and interacting with us.

Her blood gas at 8pm was pretty good, cO2=46, pO2=85. At midnight, her total chest fluid output was 36 for the left and 79 for the right, for a total of 115.

Nurse Michelle is taking care of her tonight, so we have left her in good hands! Thank God for nurses that truly care about our baby girl. It is so appreciated.

We are on track to keep a steady course. Please pray for Ella’s specific needs: her chest fluid to continue draining to the point where it resolves completely and for her strength to increase each day.

Also, for us to remain strong in our faith and persevere. God is speaking to us so much each day. We want to keep listening and obeying Him. We know if we do that, He will take care of the rest.

Hebrews 10:36
36 You need to persevere so that when you have done the will of God, you will receive what he has promised.



 
Sep
18
    
Posted (Tina) in All Posts on September-18-2007


Ella is having a stable day. She is currently asleep, but we could not resist showing you this picture of her bright, awake eyes from last night.

Her latest blood gas was cO2=55, pO2=86, which is acceptable for her condition right now. Her saturations are not as high as we would like but are hovering around the mid 90’s.

We have not talked to Dr. Kays today, so we are not sure what to think about her chest fluid output. Her total for the day was 2 from the left and 7 from the right, for a total of 9cc’s at 2pm. So once again, they are not draining. Is it due to the decrease in octreotide medicine from 10ml to 7ml? Is one of the tubes clogged again and needing replacement? We are not sure.

All is perfect in His timing. Thanks again for your continued prayers.



 
Sep
18
    
Posted (The West's) in All Posts on September-18-2007

We sit here in disbelief that our baby girl is already 8 weeks old!!! Holy cramole…time both flies and crawls at the same time. =)
 
Ella had a good day. Her stats were stable and her latest blood gas at 8pm was looking good (cO2=59, pO2=90). Her chest tube fluid output was 37 for the day when we checked at 11:30pm.
 
We saw Dr. Kays this evening. He confirmed that we’re on a slow boat to China, but the boat is moving, and in the right direction.
 
He pulled up Ella’s most recent chest x-ray so we could take a look. It looked pretty good, better than a few days ago for sure. Both lungs were more defined which indicated less fluid in her chest.
 
His plan is to take a chest x-ray each morning. If the chest x-ray looks good, the plan will be to simply maintain stats and good blood gases throughout the day (we should not be too concerned with her chest fluid output being lower for the day).
 
If her blood gases are not as good, her chest x-ray is hazy and she is not getting chest fluid output, he will look to replace the chest tube(s) again. He confirmed that besides aggressive surgery, this is the best plan for Ella right now until her body resolves the issue on its own.
 
She’s tolerating her food well. Dr. Kays has been pleased with her progress in this area and has increased her continuous dose of Portagen to 2cc’s per hour.
 
We still have a ways to go, but Ella’s progress is hopeful. Dr. Kays is hesitant to ween her ventilator while she’s dealing with this fluid issue because it can turn around and cause her problems. This is why Ella’s fluid issues needs to be resolved, so she can take her next steps.
 
Thanks to all of you for your support. Please continue to pray for Ella and the fluid hurdle.
 
God Bless.



 
Sep
19
    
Posted (Tina) in All Posts on September-19-2007


In case ye did nay know, today be International Talk Like a Pirate Day.

Ella be doin` well today. Th’ monkeys an’ bears be keepin` th’ lass’ company. An`eyeball that smile o’ hers!

Her last blood gas at 4am be cO2=67, pO2=73, nay quite as good. Nurse Michelle did mention that she be fussy near th’ time th’ blood gases be performed, so maybe that be part o’ th’ lower numbers.

Nurse Angie be takin’ care o’ th’ lass’ today. Th’ lass’ next blood gas be at 12 high tide (12 noon). Hopefully them numbers be better although Ella seems t’ be fussy well into this mornin’ too.

Aye, we guarantee ye, that Ella tends t’ be more fussy when she be less comfortable. So, we be nay sure if she be retainin’ more fluid or why she might be more uncomfortable.

Nurse Angie reported that th’ lass’ stomach looks a bit more distended today. This be most likely due t’ th’ increased amount o’ Portagen they started last high tide’ (up t’ a continuous flow o’ 2ccs per hour). They be watchin’ that closely t’ make sure she be processin’ th’ formula an’ nay havin’ any other issues related t’ th’ digestion.

Her total chest fluid output fer last high tide’ be 35 fer th’ starboard side (right side) an’ 38 fer th’ port side (left side), fer a total o’ 73. Since 7am, she has output 6 fer th’ starboard (right side) an’ 5 fer th’ port (left side), fer a total o’ 11ccs.

We be goin’ t’ assume that th’ lass’ chest x-ray looked good since Dr. Kays has nay gi’en any other orders. Stay tuned sea dogs an’ land lubbers!

UPDATE (1:20pm EST): The nurse practitioner just called and Ella`s blood gases at 12 noon were worse. She has continued to be fussy. Also, she confirmed that the chest x-ray doesn’t look as good as the one yesterday and that the chest tube fluid output has been minimal so far. Therefore, Dr. Kays is going to be replacing the right chest tube this afternoon.

This news is not surprising. When the nurses mentioned that Ella was more fussy and not recovering well throughout last night and all day today, we had the sense that this was because she was uncomfortable. This typically indicates a build-up from fluid in her chest. Now our inclination has been confirmed!

We ask that ye continue t’ pray fer our wee lass’!



 
Sep
19
    
Posted (Tina) in All Posts on September-19-2007


Ella turned down the wrong path today.

If you read the last post (yes, that was me writing in pirate talk and not Josh, although he is wacky too), then you already know that her chest x-ray was not good this morning. Her chest tubes had drained only 38 ccs total (11 left and 27 right) plus she had a poor blood gas at 11:30am (cO2=70, pO2=66).

So around 2pm, Dr. Kays replaced her right chest tube, in the hopes of getting more fluid reduction. Her drop in stats and overall stability is all related to the accumulation of fluid in her chest cavity.

Since the chest tube replacement, there has only been a total of 13ccs (8 left and 5 right). This is not much and does not indicate forward progress.

We ran into Dr. Kays around 8pm. He noted that the right chest tube replacement earlier did not gain us much, so he is getting closer to ordering a CT scan to assess what is happening with the fluid in her chest. He thinks that her body might be building protective pockets around the chest tubes and preventing the fluid from draining.

The CT scan will show this type of detail. But, it is a big deal to get a CT scan completed because they have to transport her to another area of the hospital. This is the main reason that Dr. Kays has held off on ordering the CT scan – – it is a production.

He did mention that he is pleased with how she is handling the food and he does not see that it is increasing her fluids or contributing to the fluid issue. Also, he increased Lasix to 4x per day (this helps with her overall urine output).

Once Dr. Kays left, they ran a blood gas at 9pm. This proved that she is still accumulating fluid and not feeling well (cO2=79, pO2=79). He was paged with the information and gave verbal orders to increase the ventilation and take another blood gas in an hour.

When we first went to Ella’s bedside tonight, one thing we noticed: the socks had been removed from her hands. She does tend to pull on the lines, plus her nails are very long and she has been known to scratch her face. So we asked the nurse to make sure and place the socks back on her hands at some point.

We just called and her 10:15pm blood gas was about the same (cO2=71, pO2=69), not too much improvement. No other changes for tonight.

Although the nurse did mention that somehow Ella got ahold of the line in her neck and pulled the dressing away. That is a bit scary.

Dr. Kays has been talking about how he wants to remove that neck line because it has been there a long time and carries a high risk of infection (this is the same place on her neck where the cannulas were inserted for ECMO, so it has been there for 8 weeks).

As a precautionary measure, the nurse ordered a chest x-ray to make sure that the line is still intact and nothing else occurred. Those socks have been put back on her hands. Maybe a note will go down on her chart to ensure that those socks remain intact!

Our hearts are heavy tonight. We are feeling a bit weary. We know that God is with us, He is present with us, He is sovereign and in control, all in His timing. Yet, we are feeling a bit discouraged since we cannot seem to overcome this fluid issue.

Now that the chest tubes are not appearing to make much impact, Dr. Kays already hinted that we might need to consider surgical intervention.

Please continue to pray for Ella as well as wisdom for Dr. Kays. We want to see the chest fluid issue resolve. We really are not excited about the idea of having to surgically go into her chest to try and resolve this issue, when Dr. Kays is not confident that he can fix it on his first try.

Also, please pray for us as Ella’s parents. We certainly want to be open to what the Lord wants us to learn through this experience. We want to be obedient to Him. In other words, we don’t want to be road blocks. Please pray that we would hear His voice during this trying time.

Psalm 61:2
From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.



 
Sep
20
    
Posted (Tina) in All Posts on September-20-2007

Sorry for the late posting!

Ella’s day has been stable. Her blood gases are not great, but have slowly moved in the right direction. The 4am blood gas was cO2=61, pO2=75. Her blood gas at noon was cO2=55, pO2=71.

Her chest fluid output was 67ccs total for yesterday; 24ccs for the left and 43ccs for the right. The chest fluid output today as of 5pm has been 38ccs on the right and 5 ccs on the left for a total of 43ccs.

We know that she had a chest x-ray this morning, but have not heard from Dr. Kays so we are not sure if it looked the same, better or worse. We think it was probably the same or better since no other changes have been made today.

She is still handling her food well, so Dr. Kays did increase her Portagen intake to 3ccs per hour on a continuous flow.

The nurse made mention that Ella has been sleeping a lot, even on her right side! The only time she has been fussy is when she needed suctioning and then she has calmed right back down. In our world, we know that this means that Ella must be feeling better but there is always the possibility that she might take a wrong turn again.

If we continue to replace chest tubes and/or her stats remain the same or get worse (like they did yesterday), Dr. Kays will need to discuss surgical interventions. By the way, I did want to clarify: Dr. Kays is absolutely the best, most-qualified surgeon to care for Ella, even with this fluid issue.

Yesterday, I mentioned that he is not confident about fixing the fluid issue via surgery on the first try. This is because the technology does not exist to show or pinpoint to surgeons the exact damage or lesion area within the thoracic duct. Plus, the thoracic duct is complex and long, weaving in your chest area, spine, down through your abdomen.

Dr. Kays simply described that it is not a very satisfying surgery. You could go in, repair and find out later that there was a lesion or damage somewhere else within the thoracic duct. So, the success rate for surgeons in general is not high, but that is no reflection on Dr. Kays.

The next few days are critical for Ella. Pray for good chest x-rays (Go Ella! No Fluid!), stable blood gases and her overall comfort. Even if we can remain stable and have very small, minor steps in the right direction, Dr. Kays will continue to be patient and let Ella’s body resolve this fluid issue.

Please continue praying for our sweet little bun!

This verse spoke to us this morning:

1 Peter 5:6-8

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.