Sep
30
    
Posted (Tina) in All Posts on September-30-2008

Ella had another rough night.

This time, it seems like the continuous feed was not really the issue. She needed to be vented a few times, but otherwise tolerated the Alimentum 20 calorie formula. But at 3:30am, she became fussy and not consolable. This lasted until this morning. Finally, at 9am when the java hit my bloodstream, I was happy that another day had arrived.

During rounds, we discussed the Care Conference. It is scheduled for tomorrow at 2pm. This is where the head doctors from different specialties come together for a meeting to discuss the milestones for the patient. Right now, we feel this is necessary to determine the common, long term care goals for Ella.

Also, we will be openly discussing the proposition from Dr. Fagan to undergo another heart catheter procedure and try to stint open Ella’s superior vena cava. Although there are no guarantees that he will be successful and we do not know of the outcome for her, there is also a chance that it could be a really good thing to help with her overall fluid and pressures related to her heart and lungs. If we’re lucky, it could also help with her body’s ability to absorb/regulate fluid and minimize the back up into her lungs.

Ella is now up to her full dosage of Aldactazide. She did urinate more today which is a good sign. Her face still looks a tad puffy and she is still battling upper airway congestion. Tomorrow morning, she has labs scheduled at 8am. They will take a BMP and also test her thyroid and adrenal gland levels. They want to rule out any hormonal differences playing into her high heart rate.

Speaking of a beating heart, it seemed like it was getting a tad lower this evening. We will have to watch it throughout tonight and tomorrow morning. It might be the increased dosage of sildenafil helping out. In the past, the sildenafil definitely helped bring down her heart rate. We’ll just have to see.

Yes, I know the title of the post is strange, but we are walking on not-so-thin ice these days, relatively speaking.

One year ago today, Ella was at the height of her chylothorax in the NICU on the 69th day of her life. She was dancing on the edge. We named the title of our post “Thin Ice”.

And although we are sitting in the hospital one year later, Ella is in a totally different place. We are still dealing with “fluid” issues and her overall health. But look at a glance of today versus just one year ago.

James 1:2-4 (The Message)
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

God is so good and has blessed us tremendously with Ella Renae. Yes, it is tough. It wears on us, some days more than others. But his Word tells us to consider it a gift when we are challenged.

Lord, as we head into another day at the hospital, we seek you and praise you for another day with Ella. We ask for your will to be done in our lives. We thank you for all the blessings you have bestowed upon us. Give all the doctors wisdom to make the right decisions for Ella’s long term care. Help us to discern which decisions for Ella are in your plan. We thank you for how far you have brought Ella and for the work you continue to do with her life. In Jesus’ Name, Amen.



 
Sep
29
    
Posted (Tina) in All Posts on September-29-2008


Ella did not sleep last night.

The Alimentum 20 calorie food went in a bit better and did not give as much tummy trouble, although she had a lot of gas. Each time I fed her, it required multiple times of venting. Also, she still was waking up retching on her own airway secretions throughout the night.

For food, they wanted Ella to try Alimentum 26 calorie since this is the food she ate before surgery. Unfortunately, she did not tolerate it. It gave the same symptoms as the Peptamen Jr – tummy pain and lots of back up including large amounts of bile. I think it is still too dense for her. When we switched back to the Alimentum 20 calorie formula this afternoon, she tolerated it much better.

We have been bolus feeding her 2 times overnight. Tonight, we are going to try and go back to a continuous feed overnight (180ccs for 6 hours; rate of 30ccs per hour). Back at home, she was on a continuous feed overnight before and we are hoping that she will tolerate it since it is only 20 calorie Alimentum. This is what we would like to go back to doing for a home regimen, so we hope it works.

By 6pm tonight, the pulmonology team opted to increase her dosage of the Aldactazide diuretic to the most it can be. We are hoping that it is enough to put Ella in a good place. The next 24 hours will be telling. If not, they will have to look to add the Bumex (a loop diuretic) back into her regimen. Because she has calcium deposits on her kidneys, they are trying to not use Bumex.

There were times that Ella seemed really happy and herself today. Yet, there were other times that she was in pain or simply did not feel well. It was a roller coaster type of day. When the times were good, we tried to take advantage of them.

Kelly the nanny spent the day with us at the hospital. We figured it would be good for Ella to start seeing her on a regular basis and I can start with teaching her about Ella and her care. Most of the time, Ella exhibits stranger anxiety. Today with Kelly, she did not act much different. That was a fun, positive experience for Ella.

Another noteworthy item: I placed Ella’s hair in pony tails today! It was a fun change of pace. Her hair is finally getting long enough and I finally bought some special rubberbands the other day that work great with fine hair. I think she knew that her hair was sassy!

At this point, the doctors are running out of ideas. Please pray for God’s wisdom and guidance in the decisions that need to be made in the coming days.

We really desire for Ella to be discharged from the hospital, but know that He has a plan and that His timing is perfect.



 
Sep
28
    
Posted (Josh) in All Posts on September-28-2008


I stayed at the hospital last night so Tina could get a solid nights rest at home. Ella woke up about every 45 minutes last night. The first couple times were related to food, and I think the others times of restlessness were more caused by her elevated heart rate of 170bpm at rest.

Ella continued to have problems with her feeds…a combination of Peptamin Jr and Pedialyte. She’s been very gassy, both from her G-Tube and from a toot factor…and man, her toots will knock you over. I also sense that she’s uncomfortable even during the feed. Typically within 25-35 minutes of when her feed has completed, she has a meltdown related to discomfort. Some pain is alleviated when the gas escapes, but not completely.

At her three o’clock feed she had a MAJOR meltdown. On a scale of one to ten, she was an eleven and this went on for 20 minutes. I called the resident doc to come in and look at her so he could see just how much this food was affecting her. My gut keeps telling me that it’s the food. So at this point, I want them to change this because this has been going on for way to long (a few weeks now) and I’m tired of us torturing our kid this way.

Ella has also been pushing up a bunch of bile during these episodes while were venting her G-Tube. I had shown this to other nurses and docs in the past, but the didn’t seem too overly concerned. I always like a double check on this because we were told in the NICU at Shands that if Ella ever starts pushing up dark green fluid, there’s a good chance she has an obstruction in her intestines.

Well the doc who was on today seemed a bit more concerned. So much so that he ordered a three panel xray of her gut to check for any problems. He also wanted to check her potassium because if it gets too low, it could affect the motility in her intestines.

After talking it over with Tina, I also asked if we could switch her back to Alimentum (even just the 20 calorie version) for the next few feeds to see how she tolerates it. If she handles it well, it confirms that it’s the food. At this moment, she is sleeping comfortably, and I gave her a feed of Alumentum 45 minutes ago. She had no problem taking the feed, and she’s shown no signs of distress since. Here’s hoping this continues through the rest of the night.

I’ve not heard anything regarding her lower GI xrays, and I assume no news is good news here. Her labs came back though, and her potassium was in the middle (3), so that was good. Her BUN on the other hand was 15, which is amazing because 8 weeks ago, she would have been in pretty bad respiratory distress with this kind of number. This confirms in my mind that the Captopril is doing something.

Even before seeing her BUN we’d been telling the docs that Ella still seems a bit too wet. Her clinical behaviors and increased upper airway congestion indicate to us that this is the case. The docs here feel that, moving forward, she’d be better off being a little more over dirareased, which is something we’ve known as long as we’ve known Ella ;-). With that thought they administered a single dose of Bumex (1.5mg) and took a chest xray to confirm the fluid levels in her lungs. They also increased her Aldacdizde, the thiazide diuretic (non-loop), which will hopefully allow her to level off into a balanced fluid state.

Besides all that…I’m exhausted.

5 weeks and one day in the hospital and I be lying to you if I said it didn’t suck in a lot of ways. If you have a kid, think about the time when your kid was real sick, and you were up with them all night ’cause they were puking. Then, your kid starts puking so hard that they can’t catch their breath, then they turn blue and almost pass out. Maybe you had to do that for 3 or 4 days. Now…try that scenario for 5+ weeks and on top of that, live out of a hospital, watch your kid get needles stuck into their feet, head, hands, multiple times AND have a different set of doctors with different opinions who need to really “practice” their medicine because your kid is not very straightforward and seems to not respond to any “typical” treatments.

And for Tina…multiply what I said above by at least 10 because she deals with it most of the time!

I share the snippet of reality above so that I can share this…

As much as this sucks…God’s blessing has been 100 times greater!

To have this amazing child in our lives and to see so many lives touched by her,
to see the Lord’s hand at work in so many ways,
to share Ella’s story and have people recognize and see the power of God at work,
to have people on their knees, lifting us and our sweet child up in prayer,
to draw more closely into an intimate relationship with Jesus…

THESE THINGS MAKE…

every needle,
every retch,
every sleepless hour,
every procedure,
every surgery,
every moment of anxiety,
every shortness of breath,
every tear shed…

…worth it.

God is so Awesome…We Praise Him for endless supply of mercy, love, and grace.

Oh…and speaking of how awesome God is…

Ella’s Nanny (Kelly) is now up here in Denver, helping us with the move and learning about Ella’s care. Kelly’s comments on our blog are just a small taste of what an amazing woman of God she is. We spent a couple hours in the car yesterday, driving up from Colorado Springs. Every moment we’re with her just continues to affirm how much she’s supposed to be in our lives. Thank you Lord for blessing our family with this sweet, obedient, servant of yours!

And Lord…thank you for blessing us with Ella Renae.



 
Sep
27
    
Posted (Tina) in All Posts on September-27-2008

This was the message on the dry erase board as we entered our new room upstairs. Yes, we moved out of the ICU – thank goodness! Four days of the intensive care unit was enough of a taste for me. Admittedly, it was nice to have the attentiveness of a nurse all the time. But the privacy was so lacking. We are glad to be upstairs again, although we lost our view of the mountains. Bummer!

Last night was a tough one. Ella was literally up every 30 minutes. The night seemed to last forever. Along with retching, she was having lots of gas and tummy trouble. That discomfort has lasted throughout today. While she was up all night, I had no idea that the nurse had weened her oxygen down to 500ccs. It explains why Ella may have been more fussy throughout the night and why she seemed uncomfortable. To avoid this, there are specific instructions to titrate upwards but to not wean the oxygen.

Today, she has been stable on 1 liter. Later in the day, I noted that she was breathing faster at around 75 breaths per minute and her saturations had lowered to the high 80s and low 90s. I asked the PICU docs to take a look and listen to her; it seemed like she might be a bit wet. They ordered a chest xray and afterward, opted to give her a dose of Bumex. As time passed and so did her urine, she seemed to be oxygenating better.

I feel like they keep having to chase her symptoms with more Bumex. I know this is a fine tuning process, but I think it is pretty clear that her current dose of diuretic is not sufficient to keep her in a good place.

The pulmonology team mentioned getting a consult with endocrinology on Monday. Another thought for her elevated heart rate might be an imbalance with the thyroid and/or adrenal gland. It would mean more tests, but it can certainly eliminate doubt and guessing.

Another thought that keeps coming to mind is the food she just switched to: Peptamen Jr. I think it is causing her a lot of tummy trouble, especially now that we tried to change the density of the food over the last few days. Also, I just found out that the MCT/LCT ratio of Peptamen Jr. is (medium-chain triglyceride/long chain triglyceride) is 60:40. In the past, Ella required foods that are close to 100% MCT. The medium-chain triglyeride foods help with fat absorption. Her inability to process fats in her foods does contribute to her overall fluid issue (if you remember, she could not tolerate breast milk due to the fats either).

Ella’s dose of sildenafil went back up tonight to 7mg, three times per day. Tomorrow morning, the plan is to increase it to 8mg, three times per day. It will be interesting to see what the coming days bring as far as the best meds and food to treat Ella long term. We are hoping that we can arrange a Care Conference early next week so we can discuss all the viable options.

Josh is going to watch Ella at the hospital tonight so I can go home and get some real shut eye. I’m very excited at the idea of sleeping. And just glancing at Ella’s picture below makes me want to yawn.



 
Sep
26
    
Posted (Josh) in All Posts on September-26-2008


Ella was wheeled down to the cath lab at 11am this morning. The procedure itself didn’t get started until around 12:20pm. Tina was able to go into the room with her while the anesthesiologist put her to sleep with some gas.

The doctor performing the heart cath mentioned that he may want to balloon open some veins (possibly her SVC) and could potentially use a stent to keep it open.

I just received a call (1:20pm) from the nurse practitioner letting me know that they were able to get access right away (Praise God!) and they were already testing the pressures in her heart.

At the moment, Tina and I are both outside soaking in the beautiful weather. I’m here escaping into work and she’s taking some alone time to make some calls.

We’ll post updates as the details come in from the procedure. Thank you for continuing to lift us all up in prayer.

Thank you Jesus for this beautiful day. We praise you for the gift of life, and the miracles you’ve performed in the hearts of many through our precious daughter. We ask that you give revelation to the doctors through this procedure, enabling them to more effectively treat our girl. Father, keep her safe. We pray for no complications and for stability during and after the procedure. We completely surrender and trust in you Lord. Praise you Jesus. Amen.

UPDATE 5:45pm MST (by Tina):
Ella was been stable throughout her entire procedure – praise God. She was in the procedure for about 4 hours. As Josh stated before, they had no problem getting access through her right leg. They weaved the catheter up to her heart and began to test the pressures and look at the anatomy of her heart and lungs.

The good news is that most of the major concerns with her heart were alleviated. The pressures in the different chambers were not normal, but not nearly as bad as they expected. They did confirm her pulmonary hypertension is moderate and on the arterial side. They feel that the sildenafil and captopril medicines play a huge role in keeping her stable.

Also, they were looking for 2 other potential major problems: narrowing/blockage of the veins in her lungs – those were not present. Her right lung looks good and although her left lung is smaller, both appear to be functionally working. Both have evidence of chronic lung disease with some abnormalities, but there was no narrowing of the veins coming from the lungs into the heart. Another concern was the pressures in her heart. Yet, when they gave her nitric oxide and more oxygen, she responded favorably and the pressures came near to normal.

They’ve confirmed that her SVC (superior vena cava) is completely occluded and cannot find veins on her right side going back into her heart. They are only able to see collateral veins that loop all over the right side of her body.

They were hoping that they might be able to get access in some way to the SVC so that they could try and balloon it open. They tried going into her right neck and her left neck, but did not have success at locating a place where they could balloon it open. When we looked at the images, literally there is no SVC going into Ella’s heart. The SVC is not just occluded; the opening to that part of her heart is closed off completely.

So doing the heart catheter certainly eliminated a lot of scary diagnosis that they thought she might have had going into the procedure. It told them which medicines are going to be the most effective in treating her. The plan for now is to increase her sildenafil dose to 6mg per kilo, three times per day to help with her pulmonary hypertension and increase the aldactazide diuretics to .75mg per kilo every 24 hours, divided into two doses. The plan is to watch her clinically and increase the meds as needed.

We are supposed to have another Care Conference soon to have everyone brainstorm about the best plan of action on a long term basis. Another thought: Dr. Fagan who did the procedure today took the time to show us all the images of the procedure. It was amazing to see the video clips of Ella’s heart, lung and collateral veins. Dr. Fagan thinks it might have more benefit than risk to schedule another heart catheter procedure to see if they can try to re-create the path from her heart through her SVC. If Ella’s body had that vessel open and provided another way to drain into her heart, it would likely relieve some of the pressure and it could be playing a huge role in her fluid sensitivity. If they could re-create the pathway of her SVC, they would likely place a stint to keep it open.

This is the same theory that Dr. Kays had about her fluid sensitivity. Back in Gainesville, he wanted us to consider the same type of procedure. However, the cardiology staff at Shands did not have an expertise for this type of procedure and they stressed how risky it would be for Ella, given her prognosis at the time. So, we held off.

Dr. Fagan can’t guarantee that he could get the path re-created, but he could try with minimal risk. If he does get the path re-created and places a stint, he can’t guarantee that it would resolve her problems. But on the other hand, it might. Something to consider for Ella.

The course for the next few days is to stay steady and play around with the same cocktail of medicines, trying to get Ella in a good place. I’m hoping that her Care Conference can be early next week and that we can talk about taking her home soon!

Thank you for the amazing outpouring of support and prayers. It meant so much to have people praying for all three of us today. We’re overwhelmed and overjoyed at everything He has done through this journey. We continue to trust and be in awe of the path He has chosen for us to follow.



 
Sep
25
    
Posted (Tina) in All Posts on September-25-2008

Ella slept a bit better last night. She did not start her retching until 4:30am. By 6am, I was up with her.

It was tougher to sleep in the ICU because it isn’t totally dark. But it is nice to have such close monitoring of Ella; the nurse is literally behind the glass watching her the whole night. This did make it a bit easier to disconnect and focus on trying to sleep.

By mid-morning, Ella’s color was not great. Her heart rate was between 175-190 while she was just laying in her crib. She was breathing fast at 78 breaths per minute. Her secretions seemed to be increased slightly over yesterday. Everything just felt like she was too wet. Maybe not a ton, but enough to cause us concern.

We called in the nurses and then the docs to assess her and told them about our concerns. They agreed and decided to chase her fluid with a dose of Bumex. Within 2 hours, she peed 340 grams of urine. That is a significant amount. It sure seems like whatever amount of diuretic that she has been on in the past few days is not enough to sustain her.

After the Bumex, it seemed like Ella became herself. She was smiling and laughing. Clinically, her color looked better. We’re hoping that we can figure out why she is so fluid sensitive. The procedure tomorrow should provide some answers.

On that note, we have been confirmed for 11am for the procedure. The heart catheter procedure is invasive. For that reason, we are not excited about it. But we are hopeful that it will provide more answers.

When they did the echo 3 weeks ago, they saw a borderline case for left ventricle dysfunction. Their theory is that her left ventricle is small, narrow and stiff; it doesn’t pump blood as effective as it should. This is what Captopril helps correct. That seemed fine except once the Captopril was on board and they started to decrease the diuretics, her heart rate became fast. In the past, she only had a high heart rate if she was fluid overloaded.

Ella has been on sildenafil for months (opens the vessels and allows for more oxygenation) and although not common, they wondered if the sildenafil interacting with the Captopril was causing the high heart rate. So when they weaned her sildenafil over this last weekend, then her saturations started to suffer and she needed more oxygen. Rather than just increase the sildenafil back, they had an echocardiogram done.

The echocardiogram made the doctors nervous – that is why we’re in the PICU. It showed that along with her left ventricle issue, that there is evidence of 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.

When I did some research online, I noted in a forum that one doctor told a patient that the best way to manage tricuspid regurgitation is with diuretics. This makes me wonder. Has Ella always had tricuspid regurgitation but with the massive amounts of diuretics, it was being masked or managed? I still think that sildenafil makes a huge difference for her. But the echo the other day is also the first one where she has not been on massive amounts of diuretics.

One thing is for sure: her dose of massive diuretics started to not be effective any more. That is why we came to the hospital in the first place. But, it does seem like a lot of variables including her meds have changed over the past few weeks. And when she has had a high heart rate these past few weeks, we have not heard the possibility that maybe she needs more diuretic. Food for thought…

To prepare for the heart catheter procedure tomorrow, they did an ultrasound to look for access points. They decided that her right leg looked optimal. Ella does not have a great history with access points. We’re just praying that the procedure goes smoothly with no complications.

Lord Jesus, please protect our baby girl. As she prepares for this procedure, please wrap her in your love. We know that you will be with all the doctors. We pray for wisdom and discernment. Lord, our desire is that they would learn about Ella and her anatomy so well that this knowledge would give us huge strides in her care. We praise you and thank you for where you’ve brought us and for where you are taking us as each day passes. We trust in your plan for Ella. May we continue to seek you through the highs and the lows. In Jesus’ Name, Amen.



 
Sep
24
    
Posted (Tina) in All Posts on September-24-2008

Going into the PICU (Pediatric Intensive Care Unit). Yeah…we should know better with Ella. Things don’t always go according to plan.

Last night was rough again. She was retching every 45 mins or so.

This morning, she seemed to be getting worse. Her heart rate was still high, varying from 165-190, while she was just laying in her crib. And like yesterday, her saturations were not great.

When she was asleep for her morning nap, her saturation was 92 with a heart rate of 180 and breaths per minute at 78. I have been trying to tell the docs since yesterday that she doesn’t look as good, but I wanted the nurse to communicate the same story. So, I made sure to have the nurse assess her in that moment. The nurse agreed with me, reported back to the docs and even suggested that we increase her oxygen to 1.5 liters, since Ella started saturating in the high 80s consistently.

The echo was completed this morning at 9am. I could tell based on small talk with the technician that her echo did not look great. He even stopped during the test and asked the nurse for her latest blood pressure. I have never seen that done before. My gut told me that something was not right.

When they did rounds, I did my best to articulate my concerns. I told them that the sildenafil had to be making a difference, just based on her behavior. They didn’t seem overly concerned and mentioned that they would be back to discuss the plan once they read the results from the echo.

About 1.5 hours later, a somber pulmonologist walked into my room. It was almost like his tail was tucked between his legs. He had the unfortunate task of telling me that he felt that Ella needed to be moved to the Pediatric Intensive Care Unit. The echo shows that she does need her original dose of sildenafil. In addition, they saw some things on the echo that make them question how her heart is functioning. Although they did not go into detail, you could tell that whatever they saw on the echo made them very nervous.

Also, Dr. Abman talked about a cardiac catheter three weeks ago when she had surgery. We always knew it would be a possibility. Now that they have tried playing with the sildenafil and captopril and things have not resolved with just meds, they want to go ahead and perform this invasive procedure.

As a side note, Dr. Abman is traveling today and was in touch with his team to approve this decision. Even though he was traveling in Canada today, he made sure to call the room and talk to me, to see if we had any concerns.

The docs tried to see if the cardiology team could do the heart catheter procedure today. The sooner, the better so her condition can be treated. Once they realized her history and that she is complicated, they decided to wait until Friday. This way, they can check her history and make sure that they know what they are getting into with her anatomy. They also suspect that her vessels in her heart might be narrowed, which might require ballooning them out. This way, they can also schedule a cardiac anesthesiologist and make sure they have the proper staff to handle whatever they might encounter. We have not been given a specific time for the procedure yet.

In the meantime, we are hanging out in the PICU. The room has no privacy (glass walls), is smaller, has a toilet area with a curtain but no shower. Also, you cannot eat in the PICU rooms. Definitely not the living conditions that we had upstairs. This just makes all of it a bit more challenging in the days ahead.

So we are bummed that the heart catheter test is not until Friday. This means 2 days of waiting around in the PICU before we have any information on what will help the Bun. The good news is that they are still determined to figure out what is ailing Ella. Once this test is done, Dr. Abman and his team should have all the information that they need to make an educated decision about Ella’s care.

Please pray for Ella’s heart and her comfort as we celebrate her 14 months of life today. As always, we’re trusting Him through another bump in the road. May He be glorified through Ella’s circumstances, as we continue to share and be a witness to those around us.

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.



 
Sep
23
    
Posted (Tina) in All Posts on September-23-2008

Ella was up again all night, each hour.

The retching overnight is disconcerting. I expect to have it occur during the day sometimes and also with feeding. However, I don’t expect her to wake up from sleep by retching. This has been tough on all of us. Last night, Josh woke up around 4am and offered to take over. He took care of her till around 7am, and then I let him go back to sleep for another 1.5 hours until he went to work. Tonight, Josh is working late and he is going to go to our home and have a solid night’s sleep in our bed. We need to check on our cats. The poor felines. Every few days when we make it home to pick up mail and do laundry, the cats are so lonely. Hopefully, it won’t be too much longer before we are home.

On that note, I think there is a slim chance that it will be tomorrow. When the docs rounded this morning, I gave them the overnight report. Her heart rate is not changed – – it is still too high. Weaning the sildenafil has not changed that for Ella. Also, I made sure that they knew about Ella’s oxygenation. Her color did not look as good and her saturations are all over the place. One minute she is sitting at 100, then low 90s and if she gets upset at all, she desaturates within a second or two. She wasn’t doing that on the higher dose of sildenafil. They agreed that it might be the weaning of that medicine that is causing issue with the saturations and the cause for her dusky color since those symptoms are typical for pulmonary hypertension. To confirm the status of her pulmonary hypertension, they ordered an echo.

The echo did not get completed today which is a bummer. The cardiology team was already booked for the day. And they don’t want to make any changes to the sildenafil until they take a look at what is going on with her heart. So today went by without much changes to her medicines….bummer (makes it feel like there was not much progress). Supposedly, we are on the morning schedule for an echocardiogram.

Also, we are scheduled for labs at 8am to see what her electrolytes look like. Fortunately, since they were unable to draw labs last Wed and Thurs, they gave us a break from blood draws. This was a wise move to let Ella have a break and give her veins time to recuperate. I’m hopeful that tomorrow will go better and they can get the labs they need.

Ella took 90ccs of Peptamen Jr and 10ccs of Pedialyte each feed today. It did seem to cause her a bit of grief, so we will likely hold that density of food throughout tomorrow too. I want to push her to get up to the full strength of 100ccs, but am prepared and realize that might take a while.

The swallow study was this afternoon. It wasn’t much of a study – she only took 8 swallows. I offered her the bottle (apple juice mixed with barium). She took to the bottle, took down several swigs, stopped and started retching. She had such a bad spell of retching (sometimes it is just a few retches, but this went on for several minutes). I had to increase her oxygen to 2 liters and wait a long time to calm her down and try again. After that really bad experience, she was not about to take anything by mouth. I tried purees and by that point, she would take her hand and move mine out of the way. She was so upset.

It was a bummer because it doesn’t give them much to analyze. The good news is that out of the 8 swallows that they did view, she did not have aspiration, deep laryngeal penetration, or nasopharyngeal reflux (through the nose sinuses). However, she does have pooling at the base of her esophagus right before the tightened nissen. We think this is why she is retching so much more post-surgery.

The surgery and GI teams state that retching is normal for a redo-nissen. They anticipate that her nissen will naturally loosen in 4-6 weeks post surgery. Well, tomorrow is 3 weeks and it doesn’t seem that loose. She is retching a lot and hard; pretty much like she did before surgery. We’re hoping that her GI doc will make the time to visit us in-patient so we can discuss our concerns.

Once we were done with the swallow study, we met Grandpa and went outside for some fresh air. It is only the second time that Ella has been out of her room and experienced the sunshine.

Please pray for Ella, that the doctors will be given wisdom and discernment to figure out the best set of medicines for her. Pray for her retching and feeding therapy, that it will minimize with each passing day. Also, that she will be in a stable place soon so that we can take her home.

Please pray for us and our sanity. We only have 2.5 weeks until our move date. We have been stuck at the hospital and not able to start packing for our move. It is around the corner and we are just not sure how it will all get done. We praise Him for placing friends in our lives that are willing to help during the move, but are still stressed about how all of it will get done timely.

Finally, please lift up our new nanny, Kelly, in prayer. We are so blessed to have her come into our lives. Pray that the Lord will prepare her to take care of Ella and that she will be ready spiritually and emotionally for this extremely important task. Pray that all of us can bless each other as we live together with Ella and care for her.

One thing is for sure, amongst all the strife in her daily life, my daughter still takes the time to smile at me…and that means so much. That is what really matters and I’m so glad that she takes the time to remind me each day and keep my priorities straight.

Hebrews 10:35-36 (NLT)
So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.



 
Sep
22
    
Posted (Tina) in All Posts on September-22-2008

Happy Birthday to Ella’s Daddy!

Ella was up every hour again last night. We seem to be having a problem with her retching. She will be fast asleep and then she just starts retching. I can’t imagine being fast asleep and waking up with a feeling of nausea. So although I am worn out each night, I just feel bad for the Bun. I get out of bed and try to console her and help her get past it.

The docs keep saying that it is just normal and the nissen should stretch out in 4-6 weeks. I understand that it is normal for her to retch, but to wake up from deep sleep and retch throughout the night? I don’t buy that explanation.

During the day, Ella seemed happy and was smiling for me. It is so good to see that from her.

The sildenafil was decreased again today. I think they are testing to see if they can discontinue the sildenafil completely over the next few days.

I am convinced that the sildenafil is still playing a part in her overall care. Today for the first time, her saturations were lower overall throughout the day. The only time they were 99-100 was when she was fast asleep. Otherwise, they seem to fluctuate between 92-96. This is not a bad saturation, but I wanted the docs to know that this is a marked difference from a few days ago. Up to this point, her heart has been racing faster but her saturations have not been lower. Plus, her breaths per minute were also high today, even 60-70 bpm when she was sleeping!

When the docs checked in later, they agreed that maybe the sildenafil is still having a positive impact on her. They want to watch her overnight and might end up adjusting the dosage back upward. Along with me, they were noting that her saturation and heart rate were all over the place. Sometimes the variable saturations can be a sign of pulmonary hypertension, so they want to watch it carefully.

Discharge from the hospital is being discussed for Wednesday. At this point, we really want it to be Wednesday because we are not only getting tired of living at the hospital, but we have so much to do to prepare for the move. We need to be home. But, the worst is knowing that we don’t feel that great about where Ella is at these days. They are still trying to figure out the combination of meds that is most optimal for her. And even tonight, she is breathing fast, her heart rate is high and she doesn’t seem that great. The hard part is that before, we could just dry her out and leave her in a dried state; it kept her happy and clinically looking well. Yet ever since we went off the major diurectics, and added other meds like Captopril, it has gained her a lot in some areas but now we have just created new issues.

Ella is scheduled for a follow-up swallow study tomorrow. This should give a better idea of what Ella can and cannot eat by mouth. We’re interested to see if the results are the same or different than the last study, which was completed before her most recent surgery. The results should help us when we initiate therapy sessions in the coming weeks.

Please pray that Ella’s increased heart rate will come into a more acceptable range and that her retching will be minimized. We hope that she will sleep well tonight so that we can catch up on our zzzs too.

Thank you for faithfully joining us in our journey.

Galatians 6:2 (NIV)
Carry each other’s burdens, and in this way you will fulfill the law of Christ.



 
Sep
21
    
Posted (Josh) in All Posts on September-21-2008

At this moment, Tina and I are in total shock. God is so amazingly awesome! I mean, we’ve seen many miracles along this journey and it’s not that we’ve had any doubt in our Heavenly Father. Ella is living proof of His miraculous ways every day!!! What always blows my mind is how God orchestrates our lives. When we surrender our will back to Him in obedience, we can trust that He will work out all the details.

The last ten days have been filled with huge life changing events. Tina secured an incredible job opportunity that came to her last July (mind you, one that she didn’t originally pursue). We’re moving into the home we’ve been trying to rent for the last four months because our current residence rented in less than a week (hello clear direction from God)! And, as of tonight, we have been blessed to find the most FANTASTIC individual to be a part of our lives to help with Ella.

We have been praying for wisdom and discernment in finding the right nanny. There was no way Tina could perform her new job, and for me to continue mine without some help. We’ve not felt any prompting from God that I’m supposed to quit, and we’re confident that He didn’t provide this opportunity for Tina just so she could turn it down. This is where we had to trust Him because we didn’t know how He was going to work this out. We just knew that it was a major piece that had to fall into place.

And this particular decision is a huge one for us because we will be trusting this individual with the care of our precious Ella, something that we haven’t felt comfortable doing with anyone except the NICU nurses from Florida (which is why our last “date night” was when nurse Janet came out to visit over two months ago).

One option we were considering was an au pair, but after extensive research, we decided against this route due to Ella’s complexity and the likely possibility of a language barrier. This did push us towards having a live-in nanny though, which works because we’ll have more space in the house we’re moving back into.

Tina has been interviewing nannies over phone, some local and some out of state, and we asked a couple candidates if they wouldn’t mind coming to the hospital so we could interview them. We interviewed one yesterday, and based on her experience, she sounded like a possible match. But our gut and spirit quickly confirmed that she wasn’t a right fit for us.

The nanny that came to interview today, her name is Kelly, started out on the right foot before we had even met her in person. While talking to her on the phone, Tina had asked “What is your ideal situation for being a nanny?”. Tina was expecting to hear her say something about the hours she wanted to work, details related to the job, and maybe the possible compensation. But instead, Kelly answered this way: “Well, I realize this might sound superficial, but I just want to do what God wants me to do. I don’t really have many expectations going into this”. Ok…that was the right answer. Heck…that’s the right answer to any decision in life!!

With that foundation, we were excited to meet her. She came to the hospital this afternoon around 1pm and didn’t leave ’till 8 o’ clock! One of the first things we did when she arrived was to pray together, and ask the Spirit to give wisdom and discernment to all parties. And wow….did He ever! From the moment she came in and we prayed, I knew that she was the one!!!

She shared her story and where she’s coming from and we gave some more details about Ella and the complexities of her care. Kelly responded so well to Ella, and her attitude about taking care of her was just amazing.

Tina was going to go run some errands so Kelly went along with her. This gave them a great opportunity to connect for a couple hours, plus Kelly was able to see where she’d be living with us.

Once they returned to the hospital, we had a great time continuing our conversation and getting to know each other better. The Spirit continually confirmed the decision to have her be our nanny, and I could barely contain my joy. Tina felt the same way, but I think she was in such shock.

Kelly’s spirit is so phenomenal and her attitude about the entire opportunity really confirmed things in my mind. We talked more about the details for hours and then also amenities we’d be providing. Tina even jokingly indicated that we don’t use the cheap toilet paper, only Charmin. I confirmed that anything else would have been a deal breaker for me personally, and Kelly concurred. =)

At this point it’s just a matter of timing. We asked Kelly about her availability and she indicated that she could start working right away. She also confirmed the sooner the better so that she could really work with Tina to get to know Ella real well before Tina starts work. With that in mind, she’ll probably be starting shortly after we’re discharged from the hospital. This should help a lot considering all we have to do in preparing for the move.

Oh..yeah…how’s Ella doing? =) Ella had a good day overall. Her clinical behavior was great. She’s acting so much like the happy Ella we know and love. She did have some problems with secretions overnight which caused her to retch every hour between midnight and 5am. I was on Ella duty and with my lack of sleep the previous night, I was one cranky bear by 5am. Tina stepped up, took over, and told me to go to bed. Thank God for my amazing wife. I really don’t know how she does it.

Thanks to all of you who continue to pray for us. There are so many other side stories that we experience that don’t get shared on the blog where the hand of God is totally visible.

These moments continually confirm that phrase that God put on my heart back in Gainesville: ‘There are no accidents, only God ordained moments.’