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.

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 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!

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.

Ella woke up in a good mood and did another poop for us! This was right after the docs came in to discuss discharge. We were elated! We made it home from the hospital just in time to start watching an amazing Superbowl game. It was nice to watch the game in the comfort of our own home. However, watching it aired from Miami with 60 degree weather at 7pm EST made us jealous considering the snowy weather we’ve had today in Denver!

Since we’ve been home, we’ve had 3 uneventful feeds and more poop. All in all, it seems like her system is cleared out and has started functioning more optimally. Heck, she is doing better than ever before with feeds. Twice tonight, she would start the feed laying down and would begin to sit up and crawl while I was trying to bolus feed her. Also, she used to whine and fuss when she would see me approach with the syringe (indicating that she was not looking forward to it). Now, she doesn’t say anything – – it’s so nice.

As stated before, we were in the hospital nearly a week but it gained us HUGE progress forward for Ella. In our book, that’s a touchdown!

Ella completed her first round of food tests with flying colors. After each feed, she was happy and crawling around the crib within minutes. We take this to mean that she is not experiencing any pain or discomfort.

With it being Saturday, the staff changed and that created a bit of a kink in the forward movement of things. The nurse was not sure if the doctors wanted her to have the morning dose of MiraLAX. I wasn’t sure either, so we skipped it. When they did rounds, it was decided that they wanted another set of abdominal xrays. They wanted to see if her colon was still full. The results of the xrays did show that the lower portion that was full the other day had emptied. However, it did show that the upper portion of her colon was full and also contained some air pockets. From here, they determined that she does need a motility aid like MiraLAX and recommends that we have her on some amount of it each day. For now, they are going to try 2x/day, to see if that is the sweet spot. If you remember, she took it 3x yesterday and her stool was too loose.

So, we gave the first dose of MiraLAX at 12:30pm. By the time 6pm rolled around, still no stool. I’ve heard Ella passing gas here and there, but no stool up to this point.

At 3:30pm, we started our new food plan (the one we want to use for the coming days). We gave her 200ml of Nutren Jr with Fiber plus 75mls of water. She took it without issue. This really tells us a lot. First of all, she has not tolerated that type of bolus volume before today. Even in the past, like last summer, we tried to combine feeds at the time and increase to this type of volume per feed, and ran into issues. She would complain and show signs of pain. At the time, we just thought it was gastric emptying and re-initiated her Reglan medicine. In retrospect, her bowels have likely been slower than normal this entire time and could have used a motility aid. I guess having a complete backup experience just made it come to light.

And I have never connected the feeding discomfort with a major increase in oxygen. Right now, she is sitting in her bed watching a video on .5 liter (we were on 1.5 liters when we were admitted last Tuesday). That is amazing!

We’ve been blessed this round. Although we have spent several days in the hospital, we arrived thinking she might have to undergo major surgery plus her oxygen requirement was so high that we were convinced she might be having issues with the stents. Thankfully, neither occurred. Plus, we have been able to transition to a different food and uncovered a symptom that has likely been causing some discomfort for quite some time.

I just fed her at 9:30pm – it was the third feed of the new food plan with Nutren Jr with Fiber. I’m happy to report that she has tolerated the bolus feeds with the new food like a champ. No complaining at all. Plus, about 9:45pm, I discovered poop! I was never so elated to change a poopy diaper. This means that since her bowels are functioning and she has tolerated the new food, there is a good chance that we might be able to go home later tomorrow.

We’re hoping for a restful night’s sleep with 2 more successful feeds at 9am and 12 noon. From there, it will be interesting to hear if they want to keep us or let us go home.

Ella made some great progress today.

First, the IV did not make it overnight. That wasn’t a big deal because we were no longer using the IV drip. So for me, it just meant that we could take out the IV this morning and make the Bun more comfortable. Also, this morning because the IV was gone, we were able to give Ella a bath. It is the first time that Ella has ever used the hospital bathtub. During prior hospital visits, she was much younger and we were still using an infant/toddler bath. So that was a fun time cleaning her up since it had been 5 days since her last bath! Her curly hair appreciated it too!

At 8:15am, we saw the first stool. Afterwards, they administered another enema. This time, the combination of MiraLAX (she had two doses yesterday and three doses today) plus the enemas helped move things along further. By noon, she had passed a good amount of stool…enough stool that they were confident starting Ella on food.

The dietician came up with a food plan after consulting with the pediatrician. It is a 1:1 mixture of “30k/cal EleCare” (her current food) and “Nutren Jr with Fiber” (our goal). So by 3pm, we gave her first bolus of food, 60ml of formula +120ml of water. Within ten minutes, Ella was up crawling around the bed. So I definitely think that she was not experiencing any discomfort. The second feed at 6pm was 110ml of formula +120ml of water. Again she did well with this feed, however, her stools became very loose. The plan was to give her a fourth dose of MiraLAX tonight, but asked to hold off and start with further dosing in the morning.

As I type this, I just gave her the 9pm feed which was 160ml of formula +75ml of water. She seemed to take it fine. About 10 minutes later, she had another round of runny stool. Right now, she is crawling around the crib and watching a video. She does not seem like she is experiencing any pain or discomfort.

For now, we will not feed her all night and start again at 9am (just like our routine at home). Finally, her last two feeds for this test will be 9am and 12noon tomorrow, both with 200ml of formula + 75ml of water. If she passes this feeding test, they will want us to try feeding her 200ml of Nutren Jr with Fiber (no more EleCare), 5x/day followed by a 75ml flush of water each time. This process will take another 24 hours taking us into Sunday afternoon. If we get through this food transition on her normal bolus feed schedule and Ella is still doing well, they will let us go home! Part of this test will also be figuring out the right amount of MiraLAX to give her, so that we keep her cleared out but we don’t have constant diarrhea.

Thanks for all the support and prayers. We’re so thankful that Ella is doing well, better than we had ever hoped. We give Him all the praise and glory for bringing us through this time.

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

We’ve spent all day trying to get Ella cleared out.

This morning, we had another enema. This was her third one so far. Unfortunately, it did not do much (similar to the other two). So when the doctors rounded this morning, we discussed being a bit more aggressive. About 11am, we started to give her Pedialyte via g-tube as well as the IV drip, working towards getting her off the IV drip. Each hour, we increased the Pedialyte and decreased the IV drip. By 5pm, we were transitioned off the IV drip and taking only Pedialyte via g-tube. Actually, we’re surprised that the IV has lasted this long (we’ve had to save it twice because Ella moves around so much now that she kicks it out!).

Along with the Pedilayte, the doctors ordered MiraLAX (MiraLAX draws water back to the colon, replacing what was lost, and allows normal, easy and complete bowel movements. As it works, it provides more comfort and less straining without uncomfortable side effects). As I type this post, Ella has had 2 doses of MiraLAX. So far, no bowel movements. We’re just trying to clear her out from both ends and give her intestines a true break. Once we are convinced she is cleared out, they will verify via xray.

At this point, I think we might be here until Saturday or Sunday, if we don’t hit any major bumps along the road. Our hope is to get her cleared out and start food some time tomorrow. In the meantime, Ella is still managing to smile.

Psalm 33:4-5 (NIV)
For the word of the LORD is right and true;
he is faithful in all he does.

The LORD loves righteousness and justice;
the earth is full of his unfailing love.

Ella slept fantastic last night. We had a great nurse that was stealth in checking vitals in the dark and opening/closing the door. So, I got a solid 6 hours and Ella grabbed several hours more. After being up for nearly 2 days, it felt great to sleep. Josh actually went to Grandpa’s house with Lola to sleep which is a short 10 minute drive from the hospital.

This morning, Ella had an enema to clear out her colon thus the title of this post. A little came out during the enema, but nothing since. We’re hoping this is a sign that her system is truly cleared out. Doing multiple enemas would insure that everything is cleared out, but it can throw off electrolytes. In the past, they have had a tough time “regulating” her electrolytes, so they want to be conservative and only give 1 per day.

About an hour later, we went downstairs to get more abdominal xrays. They wanted to compare the films to yesterday and verify that all the stool had cleared out of her intestines.

There was a bit of concern with dehydration since her urine output was very low (basically non-existent) overnight, even though she was taking in 50mls/hour of an IV drip. We’re happy that her IV is staying viable since many times they clot off within a few hours. Fortunately, it seems that her system is catching up and she started to urinate more this afternoon.

Then, we had another stick for a blood panel. It was irritating because they did not send in the best team. So we went through a tough 20 minute process of them trying to get blood and failing in two places. I finally cut them off and said that Ella needed a break. It was really a convenient way for me to cut them off and request someone else. And that is exactly what happened. Then, we ended up getting someone that knew us from a prior visit and the stick was successful and much less painful.

A nutritionist came to see us and discuss next steps with food. I reviewed history and gave her the number to our pediatrician. Ella’s pediatrician really wants to move forward and give Ella a new type of food to try (her current formula is intended for infants versus toddlers). So we are hoping that we get to try food tomorrow. We know that it will be a slow drip via the food pump. From there, they will look to see how Ella tolerates food. Assuming that we don’t run into any issues, I think we might be discharged on Friday or Saturday.

Without food and being a bit dehydrated, her oxygen requirements are lower. They’ve almost lowered to her baseline of 750ccs during the day and 500ccs at night. We’re really excited about this because it was concerning to have her requirements so high. We never thought about a relationship between food and her oxygen requirements. But if the intestines/bowels are in fact “stressed” and too full, it can cause pressure on the diaphragm and make it tough to breathe. Who knew that food would potentially impact her oxygen requirements?

Aside from this, Ella has been in a great mood all day. We were able to get a long line for her oxygen and pulled her over to the blowup bed to play with her. Then, she fell asleep and took a nap on Daddy.

All in all, everything is going great. We’re just so happy that she does not need surgery. If you’re going to have a partial bowel obstruction, this is the kind you want. The type where the intestines are still healthy and there are no adhesions. So basically once you get rid of the build-up of stool, you are good to go! And we hope that we can learn of something new to give her to help further with motility, so we can avoid this type of backup in the future. I’m thinking positive but things could still change once we introduce food.

As I was typing this post, the doc came in to discuss next steps. He took a look at her xrays from this morning and determined that she still needs to be cleared out. Since her labs look good, we are getting another enema this evening (possibly even another enema in the morning) along with another set of abdominal xrays in the morning. We’re hoping this gives us the ticket to proceed with food tomorrow.

I read this passage in my devotional and it hit home:

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.

We’re here at the hospital. Ella started having feeding issues after her 5pm feed yesterday. As the night progressed, it became apparent that she was in pain and would not tolerate formula. We gave her water and Pedialyte to keep her hydrated and even with that minimal fluid, her abdomen was distended and giving her problems. She was not consolable and the only time she would relax for a few minutes is if we vented her g-tube. When we did, lots and lots of bile came out, just like a previous photo I posted on the blog.

With us going on 3 weeks of feeding issues and no true resolve, we began to suspect something more serious. So when Ella continued to cry at 3am, we headed for the ER. After a belly xray, they noted some abnormalities. After sitting in the ER for several hours and taking 2 hours to put contrast in her system, we headed for an abdominal CT scan to dig deeper into the issue. They were looking for a possible partial or complete bowel obstruction and/or any other abnormalities.

Either way, they decided to admit us to the hospital. Once on the 9th floor with a great view of the mountains, it was about 3pm. We settled into our room and they just came in to let us know that the surgeons do NOT want to give her surgery. We are SO thankful. The abdominal CT scan did not give them reason or concern enough to warrant surgery. They did note that she has stool sitting in her intestine which can cause blockage and obstruction. For tonight, they have ordered an enema to clear her out, give her intestines a break and plan to reassess tomorrow. From what we can tell, it is likely we will be here another 2-3 days.

Right now, Ella is sitting in her crib enjoying her videos. Since she is just on an IV drip and not being fed via the g-tube, she is not in any pain and is in a good mood.

Thanks for all the thoughts and prayers. We will keep you updated as her hospital stay progresses.

Psalm 107:35 (NIV)
He turned the desert into pools of water
and the parched ground into flowing springs