I know, I feel guilty. It has been FOREVER since we did a post. Actually, it has only been since Feb 7th, which was 37 days ago. It is definitely the longest stretch. So, I will try to do my best and summarize.

Once we got home from the hospital, it took about 2 weeks to regulate Ella’s new food and feeding plan. We tried different amounts of Miralax as well as different feeding amounts at different times throughout the day. Right now, we are still trying to perfect it, but we’re on 5 feeds per day with 2 smaller doses of Miralax throughout the day. She has stabilized around 33 pounds and does not appear to be gaining any weight; just maintaining nicely. You can tell that she feels good. And when we feed her or vent her for gas from her g-tube, there is no bile being returned. Her system is working and she feels good!

Josh’s work has still been slow, but has started to pick up this month. For me, I’ve been given an opportunity to do some contract work from home too. Since that started, it’s been a little challenging to juggle both of us working at the same time while still managing Ella’s care along with puppy Lola. So it’s been a bit stressful and that is why you have not seen any updates. Literally, it has been a crazy, busy process with this change.

Also, we have some exciting news. We have been “stuck” at home so often and felt we needed a reprieve. So after months of research, we took our crazy idea and purchased an RV. Travel options are limited with Ella, but we knew we needed to figure something out. For example, we need to have a better way to visit family in California and visit Dr. Kays and nurses in Florida!

When we tried our first trip in our car last year, it was challenging. We stayed at hotels, packed and unpacked a bag on the luggage rack of the car with her concentrator taking up half of the trunk. We carried lots of oxygen tanks with us which isn’t exactly safe. But with all of Ella’s medical equipment, medications requiring refrigeration, and many other things, it was a long process each time we needed to stop. Along the way, if we needed to feed via g-tube or change a diaper, we had to find a place to stop. Thus, a motorhome seemed like the perfect solution for our travel needs. Ella can be fed, take a nap, hang out and play, have a diaper changed…and Josh can still be driving.

Here are some pictures of our new home on wheels. We thought about taking a picture of Lola in stride and sticking a graphic on the side of the RV.

Since this is a used RV and is quite old, there have been several repairs and things to update. The list is still long, but there were some critical items that needed to be attended to before we could go on a trip. We’ve never had an RV before, so there has been a learning curve too. Josh has been amazing – – he’s just gotten his hands dirty and figured it out. So after lots of hard work, we decided it was time to go on our first trip.

After discussion, we decided that we cannot really afford to just go on vacation and not work. If God provides the means to work, we need to take advantage of every opportunity. The nice part is that both of our work can be done remotely on the road, so we can travel in the RV and still work.

About 10 days ago, we left home and headed for CA. Ella loves being in the RV. She loved going for a ride in the car, but the RV is even that much better. She watches her videos and looks out the windows in her big play area. Lola is scared of the RV when it is in motion, so she panted at first and would pace from the front to the end of the RV. Now, she hides under the passenger seat. Macy (the cat) just takes to my side of the bed and sleeps under the comforter all day. It is nice to have the pets along with us too.

First, we had to stop in Phoenix and stay with some friends. The hospitality was amazing and the dinners were so delicious, that we ended up staying for 5 days! We parked in their driveway, worked during the day and spent time with our friends in the evening. It was great to have a change of scenery.

Last Saturday, we arrived in Southern CA and parked at my aunt’s house. We spent a couple of nights there and had a great family dinner. Now, we are parked in front of Grandma West’s house and getting in some more family time. It has been great to have our home on wheels. We just park outside and don’t have to unpack. When we’re done visiting, we go back in the RV. Truly, it’s been a great deal.

The only challenge is work. Josh and I both have projects and are being blessed with lots of work. We’re just a bit stressed because we are trying to take turns while watching Ella, taking care of the puppy, and visiting with family. Please lift us up in prayer – – that the Lord will keep us safe in our travels, the RV will stay in one piece and that we will be good servants with the work He has provided.

We plan to head back to Denver by the end of the month. In the meantime, we’re just living our life on the road and enjoying the limited time with family and friends between work. We’ll try to post more pictures of our journey over the coming days.

While our working trip to California has been enjoyable, it’s had its fair share of challenges. None of them greater though than what we’ve gone through in the last 36 hours.

Long story short: Ella’s in the hospital. A short time ago she was admitted to CHOC with symptoms of a bowel obstruction. The contrast x-Ray confirmed what we had seen before. The kiddo is very backed up.

The challenge here though is dealing with a medical system that is unfamiliar compounded with the fact of our complicated little girl.

36 hours ago we were at the Pachanga RV resort. Close to Tina’s mom. Ella spent the entire day being inconsolable. We tried all the tricks we knew, but nothing worked.

At 4:30am we packed up the rig and headed to a satellite location of Childrens Hospital in Laguna Niguel. Two failed IV attempts later plus lack of diverse resources, they recommend we transfer to CHOC.

After dealing with transport drama, we make the decision to move Ella ourselves. Mind you, our only mode of transportation is the RV.

We drive north to CHOC. Ella’s admitted. They get an IV placed in her arm, and now we start the multi-day process of letting her system clear out.

No word yet if this blockage is more serious than before, but we’ll see.

Were all totally wiped out. A little scared thinking she needed surgery tonight.

Holding off on surgery for now. In the PICU in a wait and see mode. Thanks for the prayers.

P.S. Sorry for the scare with the short post. It didn’t all come through on my phone.

Ella is stable but still not in a good place. There having problems drawing blood which is critical is assessing her condition. They tried at 2am with no success. There going to try again shortly. If you are up at this hour please pray for a successful draw. Please also pray that Ella’s pain will be minimized and that this obstruction will resolve without surgery.

Please also pray for peace and rest for Tina and myself.

Thanks for the support.

The swings of emotions have been crazy and they’ve been in lock step with Ella’s condition.

They were able to get a blood draw this morning through the IV which was a total blessing. They did a full panel and all looked good including white blood count.

Tina and I talked it over this morning though, and felt that Ella’s situation is a lot worse than her last bowel obstruction. With this, we resolved that surgery is going to probably happen. There was discussion of a possible transfer if we wanted to Denver’s Children’s Hospital but we didn’t know if that was the best plan either.

But…

They took another abdominal x-ray…and the intestines looked a bit better. Hmmmm….ok. The PICU attendings said we’ll just do more waiting and seeing. This was a relief.

Until…

The staff confirmed later in the afternoon that the surgeons hadn’t seen the x-ray yet, so the “wait-and-see” approach didn’t have 100% buy in. Well, when the surgeons did look, they weren’t convinced that the intestines were getting better. In fact, they have been more concerned over the bile output coming from her stomach. They indicated that unless this reduces significantly, that surgery is likely going to happen.

So…

Ella is stable, and feeling better because she’s on morphine, but the bile output continues to be significant and her belly is pretty distended. Unless we have a major change in this overnight, it looks like surgery is going to happen.

The doctors here have consulted with our team in Denver which has given them more insight into Ella’s unique situation. This has given us comfort that they have a taste of how complicated she really is.

We would love for Ella to take a turn away from the path of surgery, but we are telling ourselves that it looks unlikely at this point.

Please continue to pray for our precious girl. You love and support means so much to us.

By the way: Sorry for not many pictures and for my blithering posts. I’m running on about 4.5 hours of sleep for the last 48 hours. Tina’s running on 2. Praying we sleep better tonight.

Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Ella and I both caught rest last night, as the situation would permit. Being in intensive care means that they have to conduct vitals once every 2 hours. Each time they came in and started touching her, she would wake up and cry. Then, she kept crying because she was in pain. Now, the window between doses of Morphine has narrowed to once every two hours. If we don’t give her the morphine, she can’t sleep due to discomfort.

I wish that she was not outputting as much bile, but in fact she did output about 500ccs of dark green bile from her g-tube. The last time she passed gas or had a bowel movement was Wednesday morning. She had repeat abdominal films this morning – they are unchanged from yesterday. This is better than them looking worse although clinically, she is doing worse. She is in more discomfort and requiring more pain meds. Her belly is more distended. Last night at shift change they measured her belly and it was 1.5cm larger this morning. She is going in the wrong direction.

Upon exam this morning, the surgeon did a rectal exam to see if there was any presence of stool. His glove was clean when he pulled his finger from her rectum – not a great sign. If there was some presence of stool, they might try giving laxatives to help push it along. But if the obstruction is in her small intestines and is a full obstruction, giving laxatives is not going to help.

It is such a hard call for them. I think if she was a healthy toddler without other complications, the surgery would have already taken place. The first films on Thursday showed 6-7cm of dilation in her small intestine, which even in an adult, is huge and warrants immediate surgery. But because of all her other health complications and the fact that she was taking anti-coagulants as part of her daily medicines (aspirin and Plavix to help her heart stents remain open) caused great concern for the surgical team. With anti-cagulants in her system, it is a huge risk for bleeding in surgery. So, they opted to place her in intensive care and watch closely to see if rest for the intestines would lead to an improved status. The films on Friday looked better than Thursday, but still not good. Today, they look about the same as Friday. I’ve been told that they are coming by in about an hour to discuss which plan of action: wait longer or try surgery.

Thanks for all the prayers for sweet Ella. And please pray for me and Josh – it has been emotional to realize that she may need another major surgery – she’s been through so much already. It’s been even more difficult since we are at a hospital that is not familiar with Ella. We’ve been through this before when we first came back to Denver and Ella needed surgery. At that time, only Shands and Dr. Kays knew Ella.

We know that ultimately He is control. The Lord decided that this was the place for Ella to be when this obstruction happened. The truth: He orchestrates and authors every detail, only wanting the best but allowing whatever is necessary for His glory. Right now, we look to Him for our comfort and knowledge that whatever may happen, He is in charge of all the details.

This doesn’t make the emotional part any easier, so please pray for us as parents that He will equip us to make decisions for Ella today. And please pray for the doctors involved in this decision-making process – that they will have unsurpassed knowledge and discernment for Ella’s needs.

UPDATE 12:00 PM – By Josh
It’s time for surgery. It is more serious than expected. They’ll be doing a midline incision…didn’t expect that. There’s even a possibility of reherniation of her diaphragm. They think they might see some loops of intestines in her chest. Please pray for our sweet girl to stay strong through this process. She will be intubated for awhile as well. They have indicated this is a very big surgery, very high risk, and multiple issues to contend with.

Heavenly Father, we trust in you, we rest in you. Please watch over our precious child. She is your sweet girl. Her life for your Glory. Thank you Jesus. Amen.

UPDATE 7:30 PM – By Tina
WARNING: THERE ARE GRAPHIC IMAGES BELOW.


Thanks for all the prayers. Ella came through surgery like a champ. There is no question that she needed the surgery. It was confirmed that there was a large obstruction in her small intestine. The small intestine was very swollen and distended causing the large back up of bile and all of her discomfort. We are so blessed that they did not have to cut or resection the intestine. They pulled out her entire intestine to check all of it. None of it had died, so they did not need to cut any away. Instead, they just made a small incision and flushed out her bowels. The obstruction was in the small intestine, near her spleen. The surgeon noted that this was likely a problem that had been occurring for quite some time due to the scarring on the intestine. We have had small incidents like this before and that was a red flag that an obstruction was likely in our future. In previous days, it would resolve on its own without surgical intervention. Today confirmed that the surgery was absolutely necessary.

From the xrays, they thought Ella might have re-herniated her diaphragm. Thankfully, the gortex patch is still intact with scar tissue covering it (Thanks to Dr. Kays!). However, there was a portion of Ella’s intestine that was stuck to the diaphragm area which confirmed what they noted on film. Although this was not the area of obstruction, it may have become an area of concern, so they addressed that as well.

Ella is not out of the woods. The next 48 hours are absolutely critical. They expect her to get puffy and swollen and not look too good. She is intubated and on a ventilator. This was major abdominal surgery where they completely removed her entire intestine. Her body is going to be angry for a couple of days before it settles down and starts recovering. We just need to pray that she can maintain her fluid status (the docs here have not experienced Ella and fluids), and that she remains comfortable.

Thanks again for all the support and prayers. Our sweet little Bun is doing well and both of her grandmas are at the hospital this evening to provide support. We’ll update again tomorrow.

UPDATE 9:30 PM – By Tina
I thought that I would not update until tomorrow, but I did want to share that Ella has a temperature of 102.7 degrees. It might be a rough night. Please continue to pray for her!

Ella had a fever last night, but it finally broke early this morning. As her mom, I stayed up pretty much all night to oversee the management of her care. Right off the top, I will say that we have been impressed with the staff at CHOC. They are doing a good job of taking their expertise and listening to us as her parents that know Ella, to come up with a plan.

Last night was the first night post surgery with the night crew and people that don’t have Ella experience. We did our best to warn them about her sensitivity to fluids and that they may want to consider giving diuretic in the OR or shortly thereafter to maintain her fluid status. The surgical team is worried and does not want to give diuretic because they need to make sure that her intravascular system is not too dry. Yet, we know that if you go too long and let her get too wet, you will have lots of other issues to deal with besides her surgery recovery.

It has only been about 20 hours since surgery and they have started to learn to listen to her parents and the Denver docs input. Overnight, the docs were a bit too aggressive in trying to wean her and give her fluids. I was suspect, but wanted to let them get a feel for her and her responses. I did put my foot down when the overnight doc wanted to cease her nitric oxide. Since we were admitted, they stopped giving her sildenafil which she normally takes to control her pulmonary hypertension (they didn’t want to put anything in her guts and sildenafil is not available via IV). So, they opted to manage her pulmonary hypertension with the nitric oxide. Last night, the doc wanted to cease the nitric oxide because “she looked good”. I was adamant and won that battle.

Her urine output has been low. This is not surprising because she usually requires diuretic every day to keep her dry. At this point, they had not given her any diuretic. Like they would treat a normal case, they suspected that she was not peeing because she was too dry. I highly doubted that she was too dry, but wanted to give them the freedom to manage her. So, they gave her two boluses of fluid to try and encourage urine output. As I expected, no true urine output. After advocating, they gave a half dose of lasix via IV (which Ella usually likes), and she gave out 300ccs of urine! This was before they took another chest xray. Then at 5:30am, they took another chest xray. Josh and I both took a look along with the docs – I think it worried them a bit. She is very wet.

This was their first introduction to Ella and her fluid sensitivities. I called her pulmonologist in Denver, who is amazing and always makes himself available, and he gave his cell phone so that the docs at CHOC could consult with him on her fluid sensitivity and the best plan for management if needed. But before I gave them the number, the new doc in charge for the day in the PICU was already putting the pieces together which was impressive. She increased her nitric oxide, increased the ventilator settings (which had been weaned with the overnight crew), increased orders for sedation, and ordered a full dose of diuretic once every 6 hours. She mentioned a lasix IV drip. We explained that Ella tends to respond to bolus lasix better (hitting her kidneys all at once in short boluses versus a drip gives more urine output). She took in our input and changed the order which is so appreciated.

The head of cardilogy came by for a visit. He has been incredibly valuable in managing the heart and lung issues pre-surgery, surgery and post-surgery. He is the one that decided to give her nitric oxide for her pulmonary hypertension, after consulting Ella’s Denver docs. This morning, he also added Milrinone, which is a medicine that they give a lot of times to kids with a weakened heart. It will simply supplement the nitric oxide and help her heart and lungs function together. Ella has not been on this before (to our knowledge), so it will be interesting to see her response.

They consulted hematology because they want to make sure that her blood clots enough for her new abdominal scar to heal but not so much that it impacts her SVC from clotting off. So, they noted from her earlier labs that her AT3 (Antithrombin 3) count was low. This is a protein in everyone’s blood that naturally helps with clotting. Hers was 116 before surgery. This morning, it was in the 60s. They want to see it maintain 100+ throughout today, so they gave her a dose and will monitor with labs. Tomorrow, the surgical team has given the “ok” to start Ella back on a heparin drip to make sure that the SVC is not impacted.

The surgeon did come by and confirm that yesterday went very well, but her intestines were so tense and dilated, it would not have been too much time before they burst. Initially, we were just told that they would not burst but that the tissue would just die. She reiterated that her intestines would have burst which would have been deadly for Ella. Wow, how the Lord takes care of and protects this little girl…it is truly amazing.

Today’s goal is a day of rest for Ella and reducing the amount of fluid in her lungs while her abdominal scar heals. Thanks for all the love and support.

p.s. As a side note (for those of you that don’t know), when we post an update for the first time each day, you will receive an email. But as we update throughout each day, you will not receive another email. So, you’ll need to just check back every so often to see if there has been another update.

Proverbs 3:5-6 (NIV)
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.

Ella was stable overnight – praise God! We had a great nurse and the doctors already started to learn Ella from yesterday, so there were no strange orders for the night. Since the nurse was so great, I did get some shut eye!

The fever is ongoing and Ella is still battling it. Tylenol seems to help keep it under control, but she still has one even as I type this update.

I did note some red rash started on her pelvis early last night. Later, it seemed to go all the way up and cover her chest. When they looked at it, they assumed that it was just a heat rash. Another symptom: itch. At intervals throughout the night and into today, Ella will move thrash around a lot and try to itch her face (maybe trying to dance?). The attentive overnight nurse put the pieces together. It appears that Ella may be having a reaction to her antibiotic, Zosin. To control the rash and itch, they give Benadryl. The rash would subside, but after the antibiotic was given, sure enough the rash starts to reappear. Fortunately, the surgery team has given the “ok” to discontinue the antibiotic today, so we’re hoping to see it dissipate.

You might notice arm guards on Ella’s arms today. The guards keep her arms extended and prevent her from itching her face and yanking any tubes. The nurse and RT are even requiring assistance with hands-on most of the time. One thing is for sure, she is a fighter!

There are new docs on this morning. I wish we had the one from yesterday – she was amazing. I think she had lots of experience with pulmonary hypertension patients and had a great respect for moving slow. As all of you know, Ella responds best that way. The docs this morning came in talking about taking her off the vent and extubating her. I asked if they had taken a look at the chest xray from this morning. They had not seen it yet, but stated that most kids come off the vent in 24-48 hours. I took a deep breath and realized it was going to be one of those days.

I fought for leaving her on the vent. I know that Lasix has done really well and that she is negative 675 for the last 24 hours, but she is still 2 liters positive since she was admitted. In real language, this means that she has peed a lot in the last 24 hours (more than what she has taken in by 675ccs), but she still has a lot of fluid on board. Sure enough after looking at the new chest xray, the doc came back and agreed that there is no doubt she needs to stay on the vent for another day or so (ya think?).

All their intentions are good, but it is frustrating when they want to use standard care protocol that they follow with normal, healthy kids. They expect that because Ella’s numbers look good in that moment that she should follow all those same guidelines. As her parents, we’ve learned to go slow and give her more time. You should be 110% sure that she is strong enough and ready for the next step. In this case, she has had major abdominal surgery and is contending with enough much less breathing when she still has fluid on her lungs. Sometimes docs just want to move too quickly. I felt like the PICU doc yesterday understood really well, but not as much the ones today.

I think they are planning on starting heparin this afternoon since it will have been 48 hours since surgery. They will use this as her anti-coagulant for her SVC, until she is ready to take her regular medicines.

Surgery came by and was happy with how she looked. There is still a good amount of bile coming through the NG tube (the tube in her nose) and her G-tube (the tube in her belly). Once there is little to no leakage and/or the liquid is clear, we should start to see her bowels working again. So, likely another 3-5 days. The surgical nurse practitioner explained that once the intestine has gone through surgery, it closes off temporarily and slowly opens back up for operation. We’ll be looking for passing gas or bowel movements in the days to come.

Ella had another echo this morning. The goal is to check to make sure her cardiac function is good. If all looks satisfactory, they will discontinue the Mirilone (heart medicine) and just use Nitric Oxide to keep her pulmonary hypertension in check.

Overall, Ella looks pretty good. We’re just trying to let her rest, get more fluid off of her (big surprise) and keep her comfortable.

Thanks for all the support and prayers – it means so much.

One last item: if you remember, we came to CA on a road trip in our RV. The hospital does not have any place to park the RV. After Josh dropped me off at the ER with Ella, he drove to the closest location where he could maneuver, which was the Main Street Mall (just across from Macy’s). He got permission from security to park there a few nights, but they are not keen on us continuing to stay. We’ve tried the church connected to St. Joseph’s, the Ronald McDonald House, the closest Walmart, various RV parks close by (too pricey plus not real nice/secure). For one reason or another, none have worked out. But now we figured that we would reach out to those locally, as you may have an answer for us! Does anyone know of a church or business near CHOC that would allow us to just park the RV? We take up 2 parking spaces. We have our dog and cat with us, so we need someplace secure and where we can walk Lola. Fortunately, Josh’s aunt did loan us her car, so the RV does not have to be right next to the hospital although that would be ideal.

UPDATE 3:15 PM – By Tina
Josh went and pleaded again with the hospital security crew for a place to park the RV at the hospital, the sisters at St. Joseph’s, and visited other places nearby to research while I’ve stayed at the ICU with Ella. Those attempts were not successful. Another place I thought to look: the Crystal Cathedral. It is less than a 10 minute drive and they have lots of room. Josh just sent a text to my phone letting me know that we can stay there for up to 3 weeks!!!

UPDATE 5:30 PM – By Tina
And now, Josh just called because another brother in Christ has been fervent on the phone and has found another church that is willing to let us park the RV for as long as we need (Orange County First Assembly of God, www.ocfirstag.org). Yes, God is continuing to provide in the midst of the storm. Thanks to everyone that was providing ideas and trying to help us. We will update later with the spot where we’ve landed.

Psalm 46:5 (NASB)
God is in the midst of her, she will not be moved; God will help her when morning dawns.

Since we posted yesterday, lots has happened. And just so everyone knows: if you are signed up for email notifications, you will receive an email once per day when the post is first published, but then we will continue to make updates to the same post throughout the day and you will not receive more emails. You simply have to visit the website and refresh your browser to see if anything else has transpired during the remainder of the day. So for those of you who did not read the updates yesterday, you may want to!

Thanks to so many people that contacted us and networked to help out with parking the RV. As we wrote about in yesterday’s updates, we ended up having a couple of choices by the end of the day. And here is the most amazing thing: not only did the Orange County First Assembly of God provide a place to park for as long as we need, but there is 30amp electrical. Even better yet, they offered to let us refill our water this morning. When Josh explained that we would probably need to dump our tanks before we refill the water, the maintenance manager stated that we can dump our tanks at the church too! Now, how many churches do you know that have all these amenities for an RV? The Lord truly takes care of every detail.

Now, all the updates on Ella. As of yesterday when I wrote the post, Ella continued to be stable. Her fever had started to subside. The only new challenge that emerged: Ella started trying to dance a little too much! She was thrashing around so much that it was taking 3 adults to hold her down. The day nurse had given her boluses of fentanyl and versed and even increased the amount on the continuous drip. But as we headed into the evening hours, it became clear that Ella was becoming more lucid and wanted to get up and dance! It actually still seemed like she was itchy, even after we discontinued the antibiotic, so we are not sure if that was the true cause or not. The nurses can give Benadryl every 6 hours, which Ella really responds to, but then it is short lived. Finally after everything was not working, they discontinued the versed and put her on a drip of Propofol (Diprivan) @ 50 mics per kilo. Propofol is considered a general anethestic that is usually used to put kids to sleep for surgery.

The Propofol seemed to work great. She fell asleep hard and was not moving at all. Her heart rate has trended down the last couple of days from as high as 150 and is now resting in the 80s. All was great until 3am when Ella gave everyone a scare. In retrospect, they are calling it a “pulmonary hypertension spell”. Out of nowhere, she started thrashing and crashing. Her sats went down to 27 with the heart rate in the 50s. They took her off the vent and bagged her. When bagging her, they felt resistance (pressure). She did recover fairly quickly with her saturations but it took several minutes for her heart rate to climb back up to the 80s. Other than just her pulmonary hypertension, they cannot point to any other stimulus that caused the episode.

It came to light during this 3am episode with 10 people in the room as they were diagnosing, that her echo yesterday did show signs of pulmonary hypertension and mild tricuspid regurgitation. I was not aware of this fact until this time, but it started to make the picture more clear. For those of you that do not know, Ella does not show pulmonary hypertension via echos. We spent all those months in the NICU and they even told us toward the end of our visit that they were shocked, but that Ella does not have pulmonary hypertension. Then one day in the NICU toward the 5 1/2 month mark, one echo showed it. So, they gave her sildenafil and we had a new child. It was one of the biggest pieces of the puzzle to come together, making it possible for her to leave the NICU after 6 months.

When we transferred care to Denver, they ran into the same thing. She was taking sildenafil regularly, however they could never see the pulmonary hypertension on an echo. When they decided to take her off sildenafil to see what would happen, we ended up in the PICU with tricuspid regurgitation. This means that some blood leaks backward into the right atrium, increasing the volume of blood there and resulting in less blood being pumped through the heart and to the body. So, it was a bit unnerving that they are seeing both of these via the echo yesterday although it might explain this middle of the night spell. Once this happened, they decided to double the nitric oxide to help with the pulmonary hypertension. Also, they increased the Propofol to 75 mics per kilo, hoping that she would not stir again.

Ella liked her lasix and was negative for the last 24 hours with urine output by 155. So not as much as yesterday, but going in the right direction from a fluid loss perspective. Her chest xray was at 6am this morning. On rounds, they discussed that her chest xray looks improved but she still has some fluid on board. So when they came up with the plan for the day, it all revolved around extubating and take her off the vent tomorrow. We’re very excited because we’ve missed the Bun tremendously.

The docs decided that before they extubate her tomorrow, they would like to try to start giving her sildenafil again via g-tube. The surgery team gave the “ok”, but noted that unless sildenafil is absorbed via the stomach, it may not be effective given that her intestines are still shut down. The nurse gave the sildenafil and clamped off the g-tube and NG tube for about an hour to see if it would absorb.

When surgery made rounds, they took off the dressing for the incision. I was expecting a lot worse considering that the dressing was so large. Instead, it is midline but smaller than her other incision. And it appears that it is healing nicely.

Ella is still on a heparin drip for anti-coagulation. If she makes progress taking sildenafil via g-tube, they may try switching her back to aspirin and Plavix (her normal meds). For now, we’ll have to wait and see. Ella is scheduled for another echo tomorrow. It will be interesting to see if the increased nitric oxide and/or sildenafil via g-tube has decreased the pressures and reduced the amount of pulmonary hypertension.

In order to help with the acute pulmonary edema, the docs ordered Diamox (another diuretic). Ella was taking Diamox during her NICU days along with Lasix and was discharged from the NICU on Diamox and Bumex. Back then, Diamox did seem to help with getting her more dry.

They decided to give Ella a steroid today – Methylprednisolone (Medrol). It prevents the release of substances in the body that cause inflammation. They are hoping that this will help her abdominal healing.

We’re thinking tomorrow might be a big day for Ella. Please pray that her lungs are strong enough to be off the ventilator and that we can keep enough pain meds in her to keep her comfortable while awake.

Psalm 9:10 (NIV)
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

UPDATE 7:15 PM – By Tina
Ella is continuing to have some strange episodes. She’s had two this afternoon and early evening since I last posted. All of a sudden, she will start “tummy breathing” which is not something you expect while she’s on the ventilator (the machine is doing most of the work). Her breaths per minute will peak at 80 breaths per minute, saturations go low, and her nostrils flare when she is breathing quickly. She’s still sedated, so it’s tough for docs to diagnose what is really happening. One time, the nurse gave Benadryl since Ella responds to that well. This last time, she could not give Benadryl because of the timeframe, so she gave her a dose of fentanyl (pain med) to help get her through the spell. Please pray that nothing major is going on that we can’t see and that she will be successful on extubation tomorrow.

One cute thing: her nurse today was pampering her and didn’t like the sterile hospital blankets. So she went back to the donation area where volunteers from Project Linus donate blankets they’ve made by hand and found one to drape across Ella. She looks so fashionista now!

Who would have thought that 15 years from saying “I do” would land you @ CHOC (when you normally live in Colorado) with a beautiful miracle girl that God has allowed you to borrow for a time?

Today is our 15 year wedding anniversary. And it has been such a big day for Ella too.

Starting at shift change last night, Ella was too awake. They kept increasing the Propofol from 75 to 85, then 95, then 100. The 100 mics per kilo is the max amount for her weight. All of this over 30 minutes. Then, we tried a dose of Benadryl which has worked successfully so far. We waited twenty minutes, she was still awake. They called in the doc to double the fentanyl drip. Nothing was working to make Ella sedated enough. Even though they were pumping lots of drugs into her system, she was still fighting it. Under my breath, I’m thinking that is one of the reasons Ella has made it so far: she’s such a fighter.

Finally, they called the doc in again and he recommended a one time dose of Vecuronium (Norcuron) to deal with Ella in this acute state and get us through the night. Vecuronium is used as an adjunct to general anesthesia, to facilitate intubation and to provide muscle relaxation during surgery or mechanical ventilation. Although Vecuronium is often thought of as a muscle relaxant, it may be more accurate to classify it as a paralyzing agent. I was not real happy about giving her yet another drug, especially a paralytic agent as she is getting closer to be extubated, but I felt we were out of options.

Giving a paralytic agent reminded me of the NICU days. Not often, but more often that we wanted on some days, using a paralytic agent was the only way to manage Ella because she would fight things so much. The fact that she is continuing to build a tolerance to the sedation and waking up tells me that we need to do everything we can to get her off the vent.

While she was sedated and cooperating, she looked stable for a few hours so they drew a blood gas and then weaned the vent settings a little bit more to 14 breaths per minute around 3am. She has another blood gas at 6am and a chest xray. Her overall saturations, heart rate and blood gas will determine if she can take the next steps.

As I am every day and evening with the changes in staff, I was very specific with the nurse to wake me if there were any changes. About 4am, I awoke to beeps. They were suctioning her. I saw the nurse drawing up the Vecuronium in a vial getting ready to dispense again. I asked what was going on and was informed me that they were giving it again. With limited options in front of us, I may have opted for the same answer, but I would have liked to discuss with the doc on the downsides of giving this paralytic agent so close to her extubation. In other words, are we better to try more fentanyl or even give a bolus of versed? When was the next dose of Benadryl? Would that have been a better option? The Vecuronium held her for 4 hours, so it was probably a good call. I just got enraged over the principal: I specifically asked to be woken up with any changes or decisions regarding her care and I was not.

I went out to the charge nurse to voice my displeasure and make sure that we have a great nurse scheduled for the day shift since it is a big one for Ella. Once I calmed down enough back in the room, I went back to the room and confessed to the nurses that I was not happy. We had a nice talk about it. During our conversation they let me know that when Ella was waking again, they consulted the doc and found out that Vecuronium was ordered as needed for every hour. They admitted that they were under the impression that it was a one dose treatment as well. But they told me that they did try a bolus of fentanyl before I woke up and she did not respond. Once again, we had a clear discussion about waking me if they felt that she needed it again or they were planning to do anything different than normal maintenance and letting her current drips run. Once I was worked up, it took me a long time to be able to go back to sleep.

This morning, it became pretty apparent that it was time to extubate. Once the docs briefly took a look at her chest xray, which looked better, and watched her clinically, they started the process. They stopped the Propofol and the fentanyl. They took a blood gas which didn’t look great and she wasn’t responding to CPAP via the vent, but we think it is because she did not know what was going on with the tube in her throat and wanted it out! So, it was only about a 15 minute process and finally extubation at 8:40am! Ella did great – they did not need to bag her or put a mask on her face – which surprised them. They just took a blood gas and now she is doing better off the ventilator than on it! Praise God!

Now, the only challenge is her itchy rash on her chest area. Since she is more alert, she is itching herself and it is driving her crazy! This confirms what we thought the entire time: that she was itchy even through the sedation. We gave her Benadryl about 30 minutes ago. If that doesn’t work, they’ll need to start something else.

Otherwise, Ella is doing great on the nasal cannula with nitric oxide and 2 liters of O2. We’ll update later on this same page (remember, you will not get an email)!

I read this passage in my devotional a couple of months ago and shared it on the blog. For some reason, I felt prompted to share it again today. It must mean that someone out there reading about Ella’s story needs to be reminded of His love and His ways.

This is my doing (1 Kings 12:24).

The disappointments of life are simply hidden appointments of love.

My child, I have a message for you today. Let me whisper it in your ear so any storm clouds that may arise will shine with glory, and the rough places you may have to walk will be made smooth. It is only four words, but let them sink into your inner being, and use them as a pillow to rest your weary head. “This is my doing”.

Have you ever realized that whatever concerns you concerns me too? “For whatever touches you touches the apple of my eye” (Zech 2:8). “You are precious in my sight” (Isaiah 43:4). Therefore it is my special delight to teach you.

I want you to learn that when temptations attack you, and the enemy comes in “like a pent-up flood” (Isaiah 59:19), that “This is my doing” and that your weakness needs My strength, and your safety lies in letting Me fight for you.

Are you in difficult circumstances, surrounded by people who do not understand you, never ask your opinion, and always push you aside? “This is my doing”. I am the God of circumstances. You did not come to this place by accident – you are exactly where I meant for you to be.

Have you not asked Me to make you humble? Then see that I have placed you in the perfect school where this lesson is taught. Your circumstances and the people around you are only being used to accomplish My will.

Are you having problems with money, finding it hard to make ends meet? “This is my doing”, for I am the One who keeps your finances, and I want you to learn to depend upon Me. My supply is limitless and I “will meet all your needs” (Phil 4:19). I want to prove My promises so no one may say, “You did not trust in the LORD your God” (Deut 1:32).

Are you experiencing a time of sorrow? “This is my doing”. I am a “man of sorrows, and familiar with suffering” (Isaiah 53:3). I have allowed your earthly comforters to fail you, so that by turning to Me you may receive “eternal encouragement and good hope” (2 Thessalonians 2:16).

Have you longed to do some great work for Me but instead have been set aside on a bed of sickness and pain? “This is my doing”. You were so busy I could not get your attention, and I wanted to teach you some of My deepest truths. “They also serve who only stand and wait”. In fact, some of My greatest workers are those physically unable to serve, but who have learned to wield the powerful weapon of prayer.

Today I place a cup of holy oil in your hands. Use it freely, My child. Anoint it with every new circumstance, every word that hurts you, every interruption that makes you impatient, and every weakness you have. The pain will leave as soon as you learn to see Me in all things.

UPDATE 11:30 AM – By Josh
Well, we’re almost three hours after extubation and other than some major itchiness and a few withdrawal symptoms, Ella’s on the right path. We’re about to give her some Atarax to help with the itchiness and calm her a bit. Really though, we are all feeling relief. I think the pics below tell the story better than any words.

UPDATE 2:45 PM – By Josh
Ella is having some pretty strong withdrawal symptoms from the narcotics she’s been on for the last 4 days. She just scored an 11 on the Finnegan scale. For this reason they’re are going to put her on a low dose of Methadone. Hopefully this will ease her jitters and stop the waves of retching. We still get smiles, but we want the kiddo to be comfortable. Waiting on the dose from the pharmacy so we’ll see.

UPDATE 7:30 PM – By Tina
The initial dose of Methadone did not seem to have much effect. About an hour later, we had the doc examine her again. He went ahead and increased the dosage. The second time, she responded. We had about an hour of her still shaking a small amount, but not extreme. And she was very smiley, alert and responding like herself.

Around 7pm, she started acting agitated again. They just administered another dose of Methadone (which can be given every 6 hours) and I am waiting to see if it will calm her down again. Right now, she is resting in her bed and watching videos.

We are allowed to give the Atarax again. If she becomes agitated between now and the next dose of Methdone, we may try to see if that helps. It worked like magic the first time she took it! Plus, I do see her itching herself here and there and the red rash appears to becoming more prominent.

I’m having them order some aloe vera to put on her cheek and lips. When they extubated her this morning, they did not have orders to remove the NG tube initially. So, they retaped it to her face using a clear sticker. Her skin is so sensitive that when the nurse removed it later, it actually created little scabs on her face. Ouch!

We weighed Ella and she has lost 2.2 pounds since she was admitted last Thursday. We’re hoping that we can feed soon enough and start plumping her up again!

Thanks for all the prayer support. Ella did great today and we anticipate that she will progress forward well over the coming days. Please pray for sleep – for her and me – tonight in the PICU.

Poor Ella Bun. Ever since she was extubated, she is dealing with withdrawal from the narcotics. She was only on them for 4 days, but the dependence had already started. The last time she had these type of narcotics for any length of time was the NICU and they took many weeks to taper them off. Here, she was stopped immediately for extubation. In typical Ella fashion, she is not following the rules. The PICU staff is surprised by her symptoms and that she is having the withdrawal.

Last night, the Methadone was working a little bit to alleviate the symptoms of withdrawal, but she was still clearly uncomfortable. So, they started Ativan which works by slowing down the movement of chemicals in the brain. This results in a reduction in nervous tension (anxiety) and causes little sedation. They ordered a one time dose to see if it would calm her down. Ativan along with a dose of Tylenol put Ella on the right track to sleep. She actually slept last night from 11pm to 6am which was fantastic for both of us. But as soon as the action started at 6am, she has been extremely jittery and uncomfortable in her own skin. She continues to scratch herself too.

So today they are using Methadone and Ativan to control the withdrawal and keep her comfortable and Atarax to alleviate the itch. We’ve also put a hydrocortisone topical cream on her skin to help with the itch. They changed the dosage and orders so that she is getting the Methadone or Ativan once every 3 hours. We’re hoping this keeps her in a better place today. Again, they are surprised at her symptoms but are beginning to really understand that Ella goes slow and does not follow the rules.

They are going to switch her back to her home medicines today. It will be a good test to see how well her meds are being absorbed in her belly. This means discontinue the heparin drip for anti-coagulant and put her back on aspirin and Plavix via g-tube like she takes at home. She has already been on Sildenafil the past 24 hours, so they are weaning the nitric oxide throughout today and plan to discontinue overnight. She is scheduled for a repeat echo in the morning to make sure that her pulmonary hypertension is under control and that the flow in her SVC has held strong.

Respiratory wise, she had another chest xray and it looks good (not too much changed from yesterday). So they are discontinuing the IV Lasix and planning to give her hydracholorothiazide via g-tube for her diuretic, which she normally takes at home too. She has been at a flow rate of 2 liters of oxygen, so they are going to wean her to 1 liter today to see how she does (her baseline at sea level is 1/2 liter).

One thing we have noticed, once the nurse gives a med via g-tube, you can only wait about 30 minutes and then you have to vent the g-tube again otherwise Ella complains. The pressure builds up and as soon as you vent it, light green bile and lots of air comes out. This means that her guts are still not operating very much. Surgery is not surprised given the the stage of obstruction prior to surgery and that she was on so many narcotics the past few days (those slow it down a lot too). The PICU docs were pushing to try and use food today. The surgery team put their foot down and told them to wait longer. Upon examination, they can tell that her bowels are still distended quite a bit and that she needs more time.

While Ella has been at the hospital this past week, we wondered what to do with Lola. So, we found a doggie daycare nearby for her to play and get exercise during the day. They open at 6:30am and close at 7pm, so it has been nice to drop her off and not worry about her while we’re focusing on Ella’s needs. We can even watch her play during the day online via webcam.

I’m not sure if Lola just has sympathy pains for Ella and misses her, but Lola has been having symptoms for a couple of days which resulting in a vet visit this morning. She will be on antibiotics for the next 10 days. Even though she was current on all vaccinations and had her Bortadella shot for kennel cough, she must have caught a bug from one of her canine buddies. We’re hoping that Macy (the cat) does not show any symptoms and catch it from Lola. Sigh…

I’m sure it is apparent from the pictures when the meds are working to help alleviate her discomfort and when they are not. Fortunately, we have been getting little glimpses of the Bun a few times per day for about 30 minutes. Please pray for Ella’s continued comfort, for subsiding withdrawal symptoms and healing throughout today and throw a request in there for Lola too!

1 Corinthians 15:58 (NLT)
So, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless.