Thanks for all the support and prayers…and for understanding that we were too tired to post last night!

Ella has been stable. They finished weaning the nitric oxide at 12:15am last night. This is the biggest thing they like to eliminate before moving us from the PICU. This morning on rounds, they debated her femoral central line. It has been in her leg for 2.5 weeks, which is a long time and makes it high risk for infection. So far, so good. But there is an increased risk each day, so they’ve debated a PICC line in her arm. We spent most of the day yesterday without giving her food in her belly in preparation for a PICC line, only to learn that the PICC line nurses would not feel comfortable giving her a PICC line (too many scarred veins). In order to get one, they would need to send her to Radiology to have it completed. They would not give us a set time and Ella would need to refrain from any food or water via mouth or g-tube for 6 hours prior to getting the PICC line. We felt like spending all of today without giving food would simply set us back more (since we already did that yesterday).

During discussion today, the docs also feel like Ella has been doing so well that we are only a few days away from not needing the central line. Because we are only a few days away, they are willing to risk the infection with the central line. In that vein (pun intended), they have laid out a well thought out plan for switching meds to g-tube versus IV, weaning/switching diuretics, getting her to have more formula versus IV fluids, etc. Although the plan is thorough, we’ll need to see what Ella tolerates. It is great to think she will be at full feeds, for example, in three days. But history has shown that Ella can be slow with changes and moving too quickly might cause a problem. Then again, you never know! Ella is always keeping us on our toes.

Another concern: she’s been fluid positive for three days and her weight has gone from 14 kilos to 14.2 kilos to 14.6 kilos the past few days. These are usually her classic clinical signs to indicate fluid retention. So, we’ll want to watch her pulmonary status closely and look for any other clinical signs of fluid retention. For today, we have been safe to stay in the PICU but might be moved to the regular floor in the next 1-2 days, depending on how Ella tolerates all these changes.

She is doing well with feeds. Right now, we are giving a bolus of 80ccs every 4 hours. Her tummy seems to be emptying fine and she is tolerating all of it without much tummy discomfort too. To give you an idea, we need to get to around 230ccs every 4 hours to be on full feeds (6 feeds per day). So, I’m not sure if she will be able to jump from 80 – 230ccs per feed in just a few days, but maybe she will surprise us.

For diuretics, they are taking the Lasix from 20mg per kilo every 6 hours to Lasix 20mg per kilo once every 12 hours, plus Bumex 2x/day (1mg each) via her g-tube, plus Aldactazide via her g-tube. This is the same dose of Bumex that she had at 6 months old when she settled in Gainesville. The goal over the next 2 days: eliminate IV Lasix in an effort to pull the central line. We’ll see how that works.

For withdrawal, they’ve decided to be more aggressive with weaning the Methadone and may wean the amount every other day while leaving Ativan the same. Once the Methadone is out of her system, they will get more aggressive with weaning the Ativan. It seems that we will likely be weaning the Ativan from home for a bit. Also in an effort to switch from IV to oral via the g-tube, they are going to start with Ativan tomorrow (any negative effects will show immediately versus Methadone can take 48 hours to show). Ella has still been having lost of withdrawal symptoms and waking up 2-3 times per night, requiring Atarax and Tylenol in addition to Methadone and Ativan to remain in a comfortable state and not too agitated. I think the picture shows how things get when she doesn’t get between doses of the withdrawal meds.

Ella’s thighs are bruised from having shots of Lovenox, twice per day. Since she is getting more food, they decided to switch her back to Aspirin and Plavix today. No more daily shots! These are her regular home medicines to help her superior vena cava stents from occluding.

Her new incision is healing nicely. The tape that was covering it finally came off on its own. I didn’t realize that they had to cut around her belly button!

Hopefully, all meds will be switched from IV to g-tube by Thursday. Then, we just have to wait for the feeds to increase enough to remove the TPN and lipids (IV nourishment). From there, they will look to remove the central line.

The other bummer about no central line: her labs. Right now, they are giving so much diuretic to keep her dry that they also are having to give up to three K-riders per day (potassium supplement via the IV) to keep her levels good. Without the central line, we will be back to sticking her again for labs which is always a challenge. Sigh…

If everything goes as planned, it looks like we might be at CHOC through the end of the week. But if Ella doesn’t respond favorably to any of the changes described, we may need to look to get a PICC line to keep IV access, minimize infection risk and give her more time to recuperate.

So along with general prayers for Ella’s health, please pray that she will not get an infection via her central line, which is close to her heart. These types of infections can be devastating.

Psalm 112:7 (NLT)
They do not fear bad news;
they confidently trust the Lord to care for them.

Last night was rough again for Ella. We only had a few hours of sleep.

She had a chest xray this morning which looked good and so they made a few changes today. First off, the respiratory therapists have been weaning oxygen during the night shift while I was asleep and not telling me! It was nice to see her at .5 liters this morning (her baseline while at sea level). However by noon, she was not saturating well. They weaned too fast so they had to turn her up. Right now, she is on 1 liter and seems to be stable. The doctors ordered to turn down the nitric oxide to 10 parts per million. Also, they decided to wean the methadone slightly.

Ella had moments of feeling fine, especially right after her withdrawal meds (like above sitting in her chair). She would get excited and happy. But then at other times, she would get very fussy and agitated, sometimes jittery and itchy. In between, she went through times of the day where she just did not want to be bothered – not even from mom or dad.

Another challenge the past few days: she is so thirsty from being dried out. She wants to take water by mouth, but it needs to be limited since they need to limit her intake. That is tough to not give her water when you know that she is so thirsty. When we have to stop giving the water throughout the day, she would get very agitated. It’s been challenging.

We were able to make some progress with food. The docs were interested in increasing her volume and I requested to stay at the same amount since we had some challenges yesterday. We stayed at 10ml per hour today, but I would bolus 20ml and let her rest for 2 hours. She handled the food and the volume fine. We gave Maalox once last night at 3am and once at 3pm to help relieve tummy pains. Otherwise, her tummy seemed to empty faster today.

We’ll see what changes come about tomorrow as we start another week. Thanks again for the thoughts and prayers.

Psalm 62:8 (NIV)
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

Ella’s day was a bit more rough – yesterday was definitely the honeymoon to get us through the coming days and provide hope.

The docs wanted to make too many changes and Ella rebelled. First, the pain management team came up with a plan to wean the Ativan from 1.5mg to 1.2mg. After a couple of hours, she started to have withdrawal symptoms. She was more shaky and just seemed agitated. Fortunately, no itch but she was clearly uncomfortable in her own skin. We ended up giving the missing amount of Ativan plus a little extra just to settle her down. The plan was to wean Methadone tomorrow. At this point, I’m not sure if they will still try or not. Throughout the day, I did notice that if the nurse was not regimented about giving one of the withdrawal meds on time, Ella let us know.

Along with Ativan, they increased her food from 5ml to 10ml per hour. We tried giving 10ml over 30 minutes and venting/resting for 30 minutes on and off. A few times though, we got clear tummy pain. When we would vent, we would get return that was a bit green in color and TONS of air. Sometimes when venting we could connect her manually with the syringe and nothing seemed to happen. But if we drew back on the syringe, we got lots and lots of air. Also, we would get anywhere from 20-40ccs in the syringe. This meant that she was not emptying as quickly. This has been our concern all along: slow gastric emptying and slow motility. Since she seemed to be having tummy pain and we wanted to see if it was her tummy versus lower intestinal pain, we got approval for a dose of Maalox. Thankfully that did the trick by neutralizing the acids in her tummy and within 10 minutes, she was calm.

Later in the day, I convinced the nurse to give her a rest from the feeds. We drew back in the syringe and she had 40ccs of formula in her belly. When you’re only feeding at a rate of 10ccs per hour, it was clear that she was not emptying real well. However once we vented all the air out, we could bolus the 40ccs right back into her via gravity, and she tolerated it fine. So we decided to give her a 2 hour break and I convinced the nurse that this was an example of how Ella tolerates bolus feed schedules better. We waited 2 hours, gave 20ccs of formula and didn’t bother her again for 2 hours. The good news: I don’t think that the formula is giving her any problems or discomfort. Plus, she had another poop tonight. This means that overall things are working. We just need to be patient on moving forward with the volumes and make sure that the gastric emptying and motility is working.

Another symptom today: tons of mucoids. Wow. Just lots of really thick secretions. Since she was so thirsty, we were giving water by mouth which was helping to break them up. But then she would cough, retch and soil the bed. We had to change it a few times. Thankfully, Josh and I were both here when these happened and Josh was able to grab Ella and lean her over so the mucoid would come out of her mouth onto the bed instead of her re-swallowing them. Along with mucoids, she was retching a lot. Oh, I wish that retching was not a daily activity. Just as we’ve noted before, it is definitely associated with her feeding via g-tube. When we were not dealing with food the past 2 weeks, we had no retching. Somehow food must be refluxing or just the pressure of her belly having something in it, even just the smallest amount is causing the retching.

The docs decided that Ella was not outputting enough urine, so they’ve increased her Lasix to 20mg per kilo every 6 hours. Plus, they are still giving Bumex, here and there. She had one dose of Bumex this morning and a chest xray is scheduled for the morning to check her fluid status. Right now, she is even on ins/outs for the day. I know that this will be another area where we need to try and wean to get back to a reasonable dose of diuretics for our trip home. We are able to dry her out to this extreme in a hospital setting where they draw labs and check her electrolytes all the time. But once we are back to a home routine, we cannot give this amount of diuretic. I’m bummed that we’ve had to use Bumex this hospitalization (we went 14 months without using it at all). It will just be interesting to see how the diuretics end up working out this round.

Her central line has been in her femoral artery (her thigh) since her day of surgery, 2 weeks ago. There is a decent amount of risk for infection as the days continue. And we have several days of hospitalization ahead of us where we need to be able to give IV meds, IV drips and do blood draws. So the plan is to switch to a PICC line on Monday (peripherally inserted central catheter). A PICC is inserted in a peripheral vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction. The last time she had a PICC line was the NICU. Hopefully, they can get it on the first try.

One cool thing: my brother and sister-in-law know a physical therapist that works here at CHOC. I ran into her today and asked for a favor. I wanted to see if we could get one of those chairs to sit in Ella’s crib. I figured it would help drain secretions and help with gastric emptying. Plus since Ella still acts like she has had a few beers, it would allow her to sit up and not work quite so hard. Apparently, the rehab/physical therapy department does not normally come and leave their tools in the PICU because they end up getting lost. But she made an exception for Ella due to the connection with my family! It will be a nice tool to use over the coming days.

In between the fussy times of discomfort and sedated moments from withdrawal meds, we did see glimpses of Ella. She would get excited, smile and play. Although the day was a bit rough, we still made a tiny amount of forward progress with feeds. We’ll see what tomorrow brings.

The doctors don’t have an explanation…but Ella started acting like herself last night at 7:30pm. She was in a great mood for a few hours, went to sleep. She woke up at 4am when the nurse changed her diaper. After 15-20 minutes, she cried herself back to sleep. She has been in an amazing mood all day, kicking her legs and smiling. Heck, she’s even been sitting up in the hospital crib, getting tangled in all her wires!

They gave more Bumex last night and she weighed in at 14 kilos, so she is still losing fluid. Her chest xray looked improved this morning. They continue to give Lasix every 6 hours and supplement with Bumex when she is positive on her fluids. Tonight, she is due for Lasix at 8pm and Bumex at 10:30pm, based on her ins/outs. She sits at 2 liters of oxygen and on 20 parts per million of nitric oxide via the nose cannulas. They are realizing how touchy her pulmonary status can be and don’t want to wean or make any changes until they have resolved some of her other issues and know that her Sildenafil is being absorbed via her tummy.

The only time she has gotten annoyed today is when she wants to drink water. You can hardly blame her – she’s so thristy from being so dried out with the diuretics.

There are so many things to make forward progress with on this child, so it is a matter of choosing one area to focus on, going slow and getting some victories. For today, they decided to try food. This time they wanted to go even slower, 5ml per hour of Nutren Jr with Fiber. Ella still had a challenge with it initially today because she gets too much air trapped in her belly when using a continous drip of food and she is still not passing gas like she does normally. So when that air gets trapped, it causes her gas pains. Instead, we talked them into letting us drip it over 30 minutes on the pump then venting for 30 minutes. Each time we vent, we usually get gas out. It has worked fine throughout today and she has been tolerating the food fine. She has been watching her videos and having a great day. We’ll see what happens over the next 24 hours. There is still concern that it could be a cumulative effect and that by the time more food gets in her, she may have slow motility or slow gastric emptying. Either way, time will tell.

Tomorrow, there is discussion of weaning her off of the withdrawal meds: Methadone and Ativan. They want to go very slowly over about a 2-3 week timeframe. They will continue to give one or the other every 3 hours, but slowly wean the dose of med.

They discontinued Benadryl yesterday and we have not given any Atarax today. She has not shown one sign of being itchy. Wow.
We have not given any Morphine because she has not shown any signs of being agitated. Wow.
She is happy and smiling. You would never even know that she was checked out the past two weeks. Wow.

We realize that there still may be bumps in the road in the coming days, but this was a true testament to prayer. Again, the doctors have no explanation for the sudden turn. We thank all of you for the prayer support and are so thankful to see our daughter smiling and feeling good today. Whether the days ahead are darker, it was a clear indication to us that He is in the midst of the chaos.

1 John 5:14-15 (NIV)
This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

Sorry for the late post – it is literally the first break I’ve had all day. So much has happened since yesterday’s post…where do I start?

Yesterday morning at rounds, I expressed that I was going to involve Denver in our discussion. Ella’s lungs are too wet and we need to dry her out. We did not make much progress in the 24 hours prior and I wanted them to get more aggressive. After I talked with Ella’s pulmonologist (who is amazing), I had the PICU attending call and speak to him as well. After their discussion, the nitric oxide machine was calibrated upward to 10 parts per million and Ella received a dose of Bumex, in addition to the IV doses of Lasix. It made me feel better to know that our pulmonologist was giving his opinion and letting the PICU doctors know that Ella needs to be more dry than an average kid.

Surgery came by to visit. Since Ella had tolerated 10ml per hour, they wanted her to stool first, but then increase the rate to 20ml per hour. While the surgeon was standing there, Ella had a melt down moment and passed out within several seconds. The surgeon was so surprised – it completely took her off guard. She affirmed to us that is not something she has ever seen happen before that quickly. Again with fluid on Ella’s lungs, this can happen often. While Ella was clamping down during this episode, she also pooped – right in front of the surgeon! So once that happened, the surgeon wrote an order to increase her feeds to 20ml per hour.

Around 2:15pm, the PICU docs also considered giving Ella another diuretic to help make the Lasix more effective. It is called Metalazone and it is a thiazide diuretic that works the other side of the kidney. It is only given in an oral form via her g-tube, so we were not sure how much would be absorbed, but figured we would give it a try. Within 10 minutes of giving the medicine, she was writhing in pain. We saw this the other day when we tried to give her Methadone in the oral format. So we stopped the food pump, vented her to let any gas out, and tried to let it back in but she fussed. The return from the g-tube was yellow in color (not too concerning, just gastric juices). So, we left it in a cup off to the side and thought we would give her a break and try later. Since we thought the medicine was likely irritating her belly, we never put it back in. After a 30 minute break, we turned the food pump back on. Two hours later, Ella complained again. This time, we had not given any medicine through her g-tube. We vented and Ella returned a bunch of food and gas. Both times, she returned about 40ccs from her belly. If her food pump was at a rate of 20ccs per hour, then this means that her tummy is not emptying real well.

They consulted surgery at 4:30pm and they advised to turn off the feeds and let her rest. Two hours later, we vented and got about 30ccs of green bile returned. Green is not the color that we want to see. This was a bit concerning. When we weighed her last night, she was 14.3 kilos, tonight she was 14.4 kilos. She was 15 kilos the night before. We are happy with the weight loss and could tell that she was saturating better today.

Last night, she did fine but woke up at 3am, crying. She had a spell where she dipped down into the 30s and passed out within seconds. The nurse gave her some meds and she settled back down. At 6am, they came to take a chest xray (turned out that her lungs looked much better than yesterday). The technician was not real gentle and she woke up Ella. This made her mad and she had another pass out moment. When she recovered from that, she started crying hard again like she was in pain. She was holding her breath and desaturating – she passed out again. All of a sudden, you could hear gas and runny poop. This happened again later this afternoon, so we gave her a suppository to help with stooling (on top of her Miralax). But again this evening we had another pass out moment right as she was pooping, so we have resolved that she must be having some pain associated with passing gas and stooling.

Surgery decided to hold off on food again today and let her rest. With the pass out spells and so many other factors, they wanted to let her rest and will reassess tomorrow. They plan on taking another abdominal xray tomorrow to make sure that her bowels are not distended again and that there is nothing wrong with her physiology since the surgery. If everything looks okay (similar to her last xray), then it is likely just motility issues.

They did give her another echo yesterday because she was having these spells, but they have not told us the final results. I’m hoping to hear tomorrow. In the meantime, they decided to increase the nitric oxide to 20 parts per million this morning via nasal cannula. Her color has not looked great all day, sometimes better than others. It’s hard to tell from the photo, but even her eyes are purple and look bruised (they kind of match her binky).

Her potassium has been running low, so between doses of Lasix, they’ve had to give her a slow drip of potassium. In order to try and help that process, they decided to switch her diuretic to aldactazide. The docs in Denver have given Ella aldactazide before since it is a potassium sparing diuretic.

She does seem very touchy and gets agitated very easily. We’re having to keep her on the doses of withdrawal meds every 3 hours plus Atarax and Benadryl for itching. Yesterday, we had to give her a dose of morphine to keep her calm on top of these meds. Today, we had to give her morphine twice. Sigh…between all her regular medicines, plus the withdrawal meds, she is one drugged child: sildenafil, reglan, zantac, miralax, aldactazide. She gets 2 shots of Lovenox every day instead of aspirin and plavix to help with anti-coagulation. Then, Ativan and Methadone for withdrawal. Also, Atarax and Benadryl for itching. Then, morphine to keep her calm. And of course, some of these meds can’t be good for motility either.

There was discussion this afternoon about giving Ella a blood transfusion. The cardiologist wondered if it had anything to do with Ella’s pass out moments. Your hemotocrit is the proportion of blood volume that makes up red blood cells. Red blood cells are the carriers of oxygen in the blood. Since Ella’s system has been under strain and her hematocrit is lower, he thought this might help her. Upon admission, her hemotocrit was 13.7. For the past several days, it has stayed around 8.5. Typically, they only strongly recommend a blood transfusion if it is below 8. Considering all the strain that her body is under along with her history, a blood transfusion might help her and certainly wouldn’t harm her aside from the inherent risks of a blood transfusion. Ella had blood transfusions in the NICU several times, but her levels were at a critical point where she needed them. Since we have had plenty of pass out spells with Ella and we have never given a blood transfusion, we didn’t feel led to take that step at this time.

We’ll see what the team thinks tomorrow about her overall fluid status, pulmonary hypertension, pass out spells, and the general motility of her guts since surgery. I did chuckle when the attending came over to us after rounds and asked how long we were planning to stay. He knows that we are not from the area and you could tell that there was concern. He wanted to make sure that we were prepared that this still might take a while. He told us that his best guess (if she stays on the same track) is 2 weeks. Yikes…

Tonight @ 10:30pm, Ella seems unsettled even though she has had Morphine, Benadryl and Ativan in the last two hours. I have a feeling that tonight might not be so restful. Actually it now 11:00pm and I just had to take a break from writing this to console her – but she was not consolable – so they just gave her another dose of Morphine. My heart is heavy – I hate using all these drugs. I miss seeing my daughter. This withdrawal from the narcotics has been the worst. We’ve been at it for a week with no end in sight. Please pray for the Lord to miraculously resolve Ella’s withdrawal symptoms.

2 Timothy 2:13 (NLT)
If we are unfaithful,
he remains faithful,
for he cannot deny who he is.

So, Ella remained stable overnight. The last dose of anti-itch medicine was later yesterday evening, but we have not had to use it since. As I type this at 10:45am, she is still asleep. We may need to use Atarax or Benadryl to control the itch once she is awake. She is still taking Methadone and Ativan for withdrawal symptoms, and receiving one of those meds every 3 hours. There may be discussion of reducing the dosage, but we’ll see.

She is still on the nitric oxide to control her pulmonary hypertension and sits at 2 liters. While she is asleep, her numbers look great most of the time. We’ll see when she is awake throughout the day. It was disheartening to see her wanting to be more alert and playful yesterday and her body not able to keep up with it, thus the nitric oxide.

Once again, I’m a bit frustrated about the fluid overload situation. As of late last night around 10pm, she was still 2 liters positive for the past 4 days and her weight was 15 kilos (she was 15.1 kilos the night before). Not really any change, so I went and asked the attending if we could increase the IV Lasix dose to once every 6 hours. As of this morning, she was not positive by a lot but still positive for a 24 hour period between 100-150. It’s not a huge amount and based on her weight, they consider that inconsequential. They told me that they are only concerned if she is 300+ positive for a 24 hour period. But once again, she is still 2 liters positive for the past 4 days and Ella is fluid sensitive and does not respond like a healthy 2 year old. Being positive at all when she is already fluid overloaded is not inconsequential!!! They took a look at her chest xray from this morning and it looks unchanged from yesterday. Ya think?

When I talked with the docs, it seems that they are not getting the picture about being aggressive and really drying her out. So, I called down to CHOC Medical Records to see if I could get a print out of all the written records since admission, so I can forward it to Denver. I want her pulmonologist to see how they are treating her pulmonary hypertension and this fluid situation. I want a second opinion. Plus, he knows how different Ella responds and just how dry she needs to be for her pulmonary system to function optimally. CHOC charges 25 cents per page to fax it over to Denver (ridiculous), but I’m going to take on the expense because I need a pulmonology expert to weigh in. Overall, CHOC has been great but they do not know Ella and continue to treat her with the same protocol as other patients AND they do not have any pulmonology experts (Denver has 18 – it is a speciality for them). All we did yesterday was give her enough Lasix to maintain her in the same place. They are not being aggressive enough and treating her pulmonary status in a way that I am comfortable with – so – it’s time to get Denver more involved.

On a positive note, Ella seemed to tolerate her food at 10ml per hour just fine without any discomfort. So, surgery would like to increase her rate to 20ml today and try it. However, they are waiting to see if Ella will stool. Her last bowel movement was Sunday afternoon. She has been taking her home regiment of Miralax for the past few days. So if she doesn’t stool on her own soon, they will look to give a suppository later today and want to see another stool before letting her increase on her rate of food.

In the meantime, I’m advocating and ruffling feathers in the PICU. I guess it’s my role in life. Sigh…

Psalm 68:19
Praise be to the Lord, to God our Savior,
who daily bears our burdens.

Remember on yesterday’s post how I mentioned that we were seeing Ella go in the wrong direction. I warned the resident during the day shift and they just wanted to “watch and see”. Later last night, it just kept getting worse. Ella had two episodes where she got upset and her saturations dropped into the 30s and she passed out on me – – twice! When this happened, we increased her to 2.5 liters and it still took a good amount of time for her to come back up. This pushed Josh and I to put on our armor and start war with the night resident. Although this particular resident had not been following her all the time, we pled our case: based on everything we know about Ella, she has to be fluid overloaded.

Then, we started asking for the facts since we’re not even convinced that she was dried out enough after surgery. How fluid positive is she for the past few days since you halted IV Lasix? We found out that she had been fluid positive 2 liters! That is the same amount as the day after surgery. Then, I asked about her weight which is another indicator. Remember when I mentioned that Ella lost weight? Well, she was 13.6 kilos three nights ago (29.92 pounds). Tonight, she was 15.1 kilos (33 pounds). She is on IV drips for nourishment, so there is no way that a 2 year old would gain 3 pounds in 3 days!

This is so frustrating. We feel like we are back at square one and that they are not listening to us about her fluid sensitivity. We had the same frustration initially in Denver until we were there for nearly 10 weeks! We are only at a week and a half, but this is painful.

After we discussed with the night resident, we negotiated one dose of Lasix at 8:30pm to see what would happen. Ella responded within the hour and peed out 178ccs. Next, we asked about another dose in 6 hours at 2:30am. At first, the resident only wanted to give a half of a dose of Lasix. That was not going to fly. Josh had already left for the night, so I put on my armor and had another discussion with the resident shy of midnight. I was able to negotiate another full dose scheduled at 2:30am. Before the nurse administered it, we changed a diaper with 95ccs. The dose of Lasix at 2:30am produced 378ccs of pee! She also had a chest xray this morning at 5:30am.

We will continue the battle with the day shift. Please pray that they will begin to listen to us about Ella’s physiology and her needs. She is not text book and they need to consider her specific needs, not the standard care of protocol. Our baby girl has so many things to recover from and deal with over the next several days – major surgery, bowels not in full operation yet, and narcotic withdrawal symptoms. The last thing we need is a fluid overloaded child battling with pulmonary edema when we know the standard protocol for preventing this effect in Ella. Please pray for IV Lasix – lots of it, so she is dry, dry, dry! We’ll update later with how the day continues to progress.

And as always through all of this, I am reminded:

Proverbs 3:7-8 (NLT)
Don’t be impressed with your own wisdom.
Instead, fear the Lord and turn away from evil.
Then you will have healing for your body
and strength for your bones.

UPDATE 9:30am by Tina
We feel better. It is the beginning of the week and all the docs that normally follow Ella are back in full swing this morning. They took a look at her chest xray and agree that she is fluid overloaded and plan to give her more Lasix today (and the xray was taken after two doses of Lasix). I’m hoping they will watch all of her factors more closely this time around. Plus, since they were not sharing her fluid ins/outs and her daily weight, we will be asking for that info each day. It’s not fun to babysit, but apparently we need to dig for all the details so we do not find ourselves here again.

Since Ella is fluid overloaded, she does not have tolerance for assessments and lots of touching from docs. When that happened this morning a few times, she clamps down, turns dusky and is having a tough time breathing. We’re just anxious to get some of the fluid off. But right now, they have her on a potassium drip for 2 hours to help balance out her electrolytes. As soon as that drip is finished, we will be hitting her with the Lasix for her first dose this morning.

The good news: surgery came by and said that her assessment looks good. They ordered an abdominal xray to check and make sure that none of her bowels were distended. Besides some gas trapped in there, Ella’s intestines look good. Today, we will be trying a slow drip of Nutren Jr with Fiber (10ml per hour), to see if she can tolerate it. That is a huge step for Ella, so pray that she will remain comfortable throughout the day and that her bowels will welcome the intro of food. We want lots of peeing, pooping and passing gas while remaining comfortable with the first intro of food…yeah, I know that is a lot to ask but we’re confident that it can happen!

Again, we appreciate all the prayers and support.

UPDATE 11:40am by Tina
We decided that amongst the madness, it was time to give Ella a bit of zen. Her experienced nurse had a great idea for washing her hair with all three of us doing our part, by leaning her over the edge of the bed with a basin on a table to catch the water. Mind you, she has had sponge baths but her hair had not been washed in nearly two weeks! Normally, Ella does not like baths at all. This time because she is battling the itchy symptoms, she actually was enjoying the head massage. Ahhh, a bit of Ella Spa Time.

We’re starting food finally. Let’s hope she can tolerate it.

UPDATE 1:15pm by Tina
It seemed like washing Ella’s hair made her feel good. As a matter of fact, she wanted to sit up and was getting excited. She was smiling at us, which is so good to see after several days. The only problem: her lips were blue, her heart was racing and she was desaturating even on 2 liters (it’s hard to tell in the picture below, but you can kind of see that there is blue around her mouth area). They had us increase the O2 to 3 liters.

Normally, we only see these types of symptoms when she is mad, clamps down to hold her breath and then passes out like last night which indicated a fluid issue. But this was clearly different in that she was not agitated, just excited and yet her heart and lungs could not handle the increased pressure which is a classic sign of pulmonary hypertension. The doc came in to assess her and agreed that this was a pulmonary hypertension spell. His first thought was to give her morphine to calm her and open up the pulmonary vessels. However, normally this is given if someone is agitated. You could clearly tell that she was not agitated. She was still itchy and showing signs of withdrawal, but she was playful and happy. Josh and I both do not want to sedate her more. She already acts like she’s had one too many beers, but at least she is happy and not completely drugged!

After advocating for another solution, Ella is back on nitric oxide via her nose cannulas. Until we are convinced that her sildenafil is being properly absorbed via her tummy, we feel that this is the best way to manage the pulmonary hypertension.

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.

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.

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!