Yep, we’ve been here three weeks today.

Ella only woke up twice last night. Both times, just like the night before, she would wake up retching. One episode last night stood out: she was up between 4:30am – 6am. At 4am, she was fed and then woke up at 4:30am with abdominal cramps. She was crying and I could tell her tummy didn’t feel well. We gave some Maalox to neutralize any acids in her tummy. Then, she had diarrhea real bad at 5am. This was the 3rd loose stool in 24 hours – it was watery. Then from 5am – 6am, she pretty much retched non-stop. If I didn’t know better, it would seem like she had the flu (vomiting and diarrhea).

During rounds, we discussed several steps. For pain management, take the Methadone from IV to g-tube. The pain management team came up with a weaning schedule that we will need to follow for Ella. Can you believe that it will take 2 MONTHS to wean her from Methadone and Ativan? I am still in shock. Once again, this is all because they have a standard care of protocol to not wean from narcotics when extubating, if it has been less than 5 days. Ella was intubated for 4 days and so they just cut off all the narcotics and she hit hard. This has been the toughest part of the whole experience. One thing is for sure: we know how sensitive Ella is to narcotics and will not go through this withdrawal stuff again without putting up a fight!

For diuretics, I was able to convince the docs to discontinue the loop diuretics (IV Lasix plus Bumex). Yesterday, we had 20mg per kilo of IV Lasix once and Bumex (1mg) twice, plus the Aldactazide. Right now, Ella seems really dry (she normally won’t drink water by mouth and she is begging for it). The IV nourishment always tends to make her more wet, but with the transition to formula, she probably does not need that much diuretic. Plus, they have been giving like 3 potassium supplements each day to keep up with what the diuretic is taking from her. Stopping the loop diuretics will definitely help with keeping her electrolytes in balance. It is a huge step, but we think she is now ready to go back to her Aldactazide, like she was on before this hospital visit. The oxygen was weaned this morning too – she is back at .5 liters and seemed to do well today. Once again, an indication of being dry.

One concern this morning during rounds: her white blood cell count was elevated from the past several days. It had been around 13 and it was 21 this morning. This was alarming only because they want to make sure that the central line does not cause infection. They took one set of labs in the afternoon to check potassium (it was 3.2) and plan for another complete blood panel in the morning at 4am. Then once Ella wakes up in the morning, they are removing the central line. This means that any other labs that are necessary will require a stick.

Another change: discontinue Miralax. It has been over 24 hours and she still has watery stool. Like I mentioned in the previous post, maybe she doesn’t need Miralax? Unfortunately even though we discontinued Miralax, we still were getting lots and lots of runny stool today. I’ve lost count on how many times she has been changed throughout the day. It’s a bit concerning too since she is retching so much more. So the night nurse thought about doing a stool sample, but each time she tried the stool was so watery that the diaper absorbed it. Getting a stool sample is the only way to determine if she has a parasite or not. We’ll see if she wakes up or has diarrhea throughout the night.

We are getting the indication from the night crew that it might be our last night in the PICU. So, we are weighing options and trying to figure out if Ella is ready to be discharged. Since we are pretty involved, it just might be worth taking the risk to deal with all the rest of her stuff from the RV versus moving to a different floor in the hospital for a few more days. But then again, I’d really like a few more days to make sure that this diarrhea is not something more serious and/or from food intolerance, that she stays dry enough on her diuretics, etc. We’ve made a lot of really aggressive changes over the past few days and I’d like to feel a bit more confident that Ella will not slip backwards before leaving the hospital. We’ll see what the docs tell us in the morning along with how her labs look, if she continues to have retching and diarrhea tonight and see how she behaves clinically.

Thanks for all the support and prayers.

Psalm 46:10 (NLT)
Be still and know that I am God!

It was a rough night again. Ella woke up five times, retching and crying in discomfort. Each time, it was near a dose of withdrawal med or in-between withdrawal doses, so we need to give Tylenol to help calm her down. The main symptom now: the ongoing withdrawal symptoms. She is touchy, gets agitated easily, and acts like she is on major drugs. It’s hard to experience her this way since her baseline behavior is so different. Normally, she is so happy. She is just cranky and agitated most of the day which is tough on the emotions hour after hour.

Ella had a repeat echo this morning. We haven’t received the official report, but just based on the preliminary report, it looks like the sildenafil is working and there is less cardiac and pulmonary pressure than any of the prior echos that she has had completed here at CHOC. She is on a double dose of Sildenafil, but at least we know it is working and being absorbed through her gut.

We decided to increase feeds today from 80ccs per hour to 120ccs per hour for three feeds and this evening at 8pm, we gave 160ccs. She is tolerating it well and is emptying better than we’ve seen even prior to surgery. They want to see her go at this rate for a couple more feeds and then increase to 200ccs per bolus feed. Our goal is 275ccs per feed. From what we can tell, it seems like she might make her goal fairly quick. Since she started doing well with feeds today, they turned off her TPN and lipids (IV nourishment).

We opted to decrease her dose of Miralax to one dose per day. She is stooling, but it is watery. Maybe she doesn’t need Miralax anymore since she does not have a bowel obstruction? It’s hard to know, but we’re hoping to figure it out in the next few days.

From a diuretic perspective, they gave the last dose of IV Lasix today and are just planning on giving Bumex and Aldactazide tomorrow. It would be ideal to wean the Bumex more in the next few days too, but that will not be a mandatory requirement for going home. We may just have to monitor this with her pulmonologist remotely from home for a handful of weeks.

For withdrawal, they weaned the Methadone dose today via IV and switched the Ativan to an oral dose via her g-tube. Since Ella did not seem to be doing well with her withdrawal symptoms, they increased the Ativan to 2.0mg per dose (versus 1.2mg), but instead of giving it every 4 hours, we are giving it every 8 hours. Tomorrow, they plan to wean the Methadone more and switch it to her g-tube versus IV. I think by tomorrow we might have everything (meds and feeds) switched over to her g-tube to where we can remove the central line tomorrow or Friday.

We tried taking Ella for a wagon ride today, complete with all of her attachments. Unfortunately, she was agitated the whole time. Normally, she loves that type of ride. Once again, I can’t wait to have my girl back.

Right now, it appears that we might be here for another 3-5 days. It will be so nice to be out of the hospital. I just wish she was sleeping sound at night. Currently, that impacts just my sleep but in the RV it prevents everyone from resting. So, we’re praying for a miracle recovery from withdrawal symptoms so that Ella can start feeling good again and all of us can sleep well.

We praise Him for our baby girl. We thank Him for her progress today with feeds and ask that He heal her body along with her withdrawal symptoms.

Psalm 29:11 (NLT)
The Lord gives his people strength.
The Lord blesses them with peace.

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.

to give a full update. Ella is stable…we’re exhausted…we will fill in the blanks later.

Thanks for understanding, and especially for the love and support.

G’Night.

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.

Well, Tina was right in her prediction on the previous post. Ella decided to wake up around 4am this morning with spells of agitation and fussiness. Benadryl and morphine were given, but she didn’t settle back in until 5:30am.

Around 6am they came by for an x-ray. A chest x-ray was ordered and we thought the surgery team wanted an abdominal xray too. They did, but the order wasn’t in the system when the tech came around. Bummer because it would have been nice to knock them both out at once.

Ella continued to be fussy throughout the morning. When Ella is in this state in can be incredibly exhausting to deal with. On top of seeing your kid not feel well, it can be extra challenging because Ella can’t tell us exactly what she wants. Most of the time, we guess correctly based on her body language, but there are times when you try everything and nothing seems to console her.

Tina has been by Ella’s side almost the entire time we’ve been here. As her mother, I know she wants to make sure Ella’s taken care of, and she’s very protective of our sweet child. It’s hard to convince Tina to break away, and she’s really only been away from the hospital couple times. I try my best to push her out of this place, but Ella’s current instability keeps her here. Today Tina took a real break though. She had lunch with a dear friend that we’ve known for many years. I’m so glad she was able to escape. She was gone for a good 4 hours. I’m hoping I can talk her into getting away more often on a regular basis.

While Tina was gone, Ella maintained her agitated fussy mood, that is, until the docs did rounds. All of a sudden it was like a switch: Ella was happy and a LOT more like herself. Sitting up, smiling, engaging us, reacting to us…just totally typical Ella behaviors. She is still on a heavy dose of meds, which makes it look like she’s had a few beers, but other than that, she’s just being more like herself. She had a honeymoon period like this briefly a few days ago, but not really since. But this time, she maintained her mood for a couple hours, right up until Tina came back from lunch. For whatever reason, Ella became agitated again, and had a major episode (desaturating and passing out). This fussiness continued all the way up until dinner, and then…she was happy again and continues to be so even as I write this. We’re really not sure why she is having these kind of swings, but at least we’re seeing some of our true kiddo break through. I hope and pray this trend continues because we’ve really missed our sweet child.

When the docs did rounds this morning a couple changes were made. They wanted to discontinue all of her PO meds, even her sildenafil because they were convinced they were not being absorbed enough to make a difference. I convinced the attending to at least keep the slidenafil even if it’s only being absorbed a little. It’s such a key component to helping Ella’s pulmonary hypertension that even if she’s only getting some on top of the NO (nitric oxide), I think it’s better than not giving it. He agreed but also confirmed he was doing it so we couldn’t point to him DCing it as a potential sticking point later. I smiled and said, “I definitely understand that”. =)

The other reason for them wanting to discontinue the PO meds was due to what they saw on the abdominal x-ray. It looked as though Ella had another significant distended loop in her intestine. Oye…this was a bummer to see. The attending confirmed that it might not be anything too concerning, but they want to keep giving her bowels a rest and see if it resolves. We did have a doc from the surgical team come around later, and he confirmed that it shouldn’t be anything to worry about. In fact, he thought it was just her colon and not small intestine. (Whew) We’ll confirm for sure with Ella’s primary surgeon, but if all looks good with this and the rest of her gut, we’ll probably try food again tomorrow.

The docs also saw that her chest x-ray today was more “wet” than the one yesterday. So even though she is getting a strong dose of Lasix every 6 hours, that’s still not enough to diurese her. They hit her with another dose of Bumex this morning and she peed out a 418cc diaper (normally Lasix produces 100-178 per diaper)! This has to be surprising to them considering they were hesitant to give Lasix every 6 hours instead of every 8 hours. We tried to tell them, but I think our pulmonologist in Denver affirmed this too. Either way, Ella just confirmed what we’ve said from the beginning. When Ella means dry, she REALLY means dry. Maybe we should get her a tee-shirt to wear with this on it:

The other suggestions that were made on rounds were to get a Nurse Practitioner from pain management involved as well as an individual that specializes in Chinese Medicine. For pain management, we want other thoughts on which meds to be giving to help with withdrawal. It seems like we are having to give so many drugs to keep her comfortable. Plus, she is still itchy. So, we’re hoping to get some insight from her. Also, the thought was to look into using acupuncture to help Ella. We’re excited to explore this area of medicine as we’ve never been presented the option before. Very cool that CHOC has it available here.

We’re so pleasantly surprised to Ella even slightly return to herself this evening. It was shocking because it came from out of now where and moments earlier she seemed so agitated. But we know that He can perform miracles and that all of you are diligently praying for her. We’re hoping that this was not a fluke – it would be great to think that Ella is actually turning a corner. The test will be in the hours to come.

Thank you all for your continued thoughts and prayer support. It means so much during this time.

1 Thessalonians 5:16-18 (NLT)
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

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.