Posted (jooosh) in All Posts on February-28-2009

Ella had a great day. We’ve all enjoyed a relaxing Saturday. Enjoy the pics of the Bun.

Posted (Tina) in All Posts on February-27-2009

I will try my best to summarize the roller coaster recovery details. Warning: this is going to be a long post!

Once we went upstairs to the cardiac unit and were in a room on Wednesday night, there was about an hour till shift change. The initial nurse was great. However, shift change occurred and it was evident from the introduction that we might have a challenging nurse on our hands. The nurse had lots of experience and that part was appreciated, but she wasn’t as keen on taking input from parents. Being Ella-ologists, that always poses a problem for us since we are very involved.

We started feeding Ella at 8pm – she handled her bolus of food great. She did seem extra thirsty, so we were having to get up, prop her in the bed and give her juice frequently. Then at 10:30pm, we ran the food pump. It was about this time that Ella fell asleep. Unfortunately being at the hospital, the sleep is always interrupted. At 11pm, they used her IV to run a bunch of strong antibiotics in her system and followed it with a flush. At 12 midnight, they wanted vital signs so she was disturbed at that time too. Each time, it took some soothing to get her back to sleep.

While she was asleep, we were able to turn down her oxygen to 750ccs. This is what we have done at home before when she is doing really good, although admittedly, it has been a while since we have been able to do that at home.

We crashed about 12:30am. All three of us slept for about 2 hours. At 2:30am, Ella woke in writhing pain. She was screaming loud. It seemed to come on suddenly. The only medicine I had in the room that I could give was Tylenol, so I gave it to her via her g-tube.

We paged the nurse and started talking through what could be going on. She didn’t seem to sense the urgency that this was not normal. Then, Ella started having bouts of diarrhea. The nurse thought it was probably the antibiotics. We were convinced that she was having some GI/belly pain and needed something to treat it. We mentioned that we would like some Maalox (it contains agents to soothe her tummy along with Simethicone (aka Mylicon) to help if there is any gas). It worked like a charm when we were in-patient at the Children’s Hospital before with Ella.

The nurse informed us that they don’t give Maalox – ??? We knew that was not true. It became apparent that the cardiac unit does not give Maalox. This was a bit frustrating because we could tell that it would help Ella, but for some reason, the nurse did not want to get it for us. We asked to see the doctor. This is when we also learned that the cardiac unit does not have a doctor on the floor overnight. The only doctor available is based in the cardiac intensive care unit. So, they have to page the doctor and the doctor uses the nurse’s thoughts via phone to give orders. So, the nurse said that she would page the on call doctor to talk through it.

In the meantime, Ella was screaming and crying so loud every couple of minutes. The pain was coming in waves, which also told us it was GI/belly related pain. Our room was near the nurse’s station, so I asked Josh to leave the door slightly open, so the nurse could hear. Once she came back about 30 minutes later, the doctor decided to order Toradol, a nonsteroidal anti-inflammatory drug for management of moderately severe acute pain. It is like giving her a stronger dose of Tylenol via her IV. Once again, we were convinced that it was not that type of pain. We agreed to go ahead and give it to her, but once again asked for Maalox and were turned down. We told the nurse that if this does not alleviate in 15 minutes or so (since it was given via IV), that we were going to need another solution. The nurse thought it was maybe the food. So, we vented her and no gas was present. And just to eliminate it as a variable, I turned off the food pump.

The time passed and it was not getting better for Ella. Josh went out to see if we could get somewhere with anyone, since our nurse did not seem intent on helping us. And by this time, Josh was worked up and we were both venting a bit. It was 3:30am and Ella had been in pain for an hour. There was no doctor available and they would not give us Maalox. Our nurse was adding fuel to the fire rather than trying to calm him down and really help us. She could have tried to apologize and relate to our frustration. Instead, she just tried to defend the system. We’ve received better care at this same hospital, down the hall under the pulmonology team. When we were first admitted, we asked to be under the pulmonology team, and it was a big political thing. They said that the pulmonology nurses would not be comfortable dealing with whatever might surface in Ella since she had a heart procedure completed. Since we thought it would only be for one night, we conceded.

So, after arguing for another hour, we found another nurse that was willing to call and get the Maalox ordered for us. It arrived at our room at 4:30am. We gave it to Ella. It immediately coated her stomach and she fell asleep. She did not make another peep. It is exhausting to be an advocate for your child, especially in the middle of the night!

All three of us fell asleep until 7:30am, when the door opened and they wanted a chest xray. Ella was sleeping, so this was not going to be good. But it was one of the things we needed in order to see if we could go home. Shift change had already occurred, and from about 3:30am forward, we never saw our nurse. I needed to make sure that food was going to be on its way and see if we could get another order of Maalox on hand, since that clearly seemed to help Ella.

So, I woke Josh and asked if he could do the chest xray. In a daze, he sprung off the air mattress and started to help. He did not realize that Ella’s oxygen had been turned down to 750ccs. The xray tech was not the best and was taking his time which was making Ella even more upset. Ella desaturated very fast and required 2.5 liters to get her to recover from the ordeal. The color in her face was bluish-purple and she did not look good. It was a healthy scare. It took her about 20 minutes at the higher level of oxygen to come back to normal. Even then, her eyes were purple and she did not look good. Aside from the oxygen scare, I think it was simply because she was tired and needed more rest. Josh was convinced that something was not right with her. Either way, it was not a pleasant way for Josh to wake up and it got his anxiety started for the day.

The day nurse started off on the wrong foot with us. It seemed like the night nurse maybe tainted her view. For example, when she first started the shift I asked her to see if we could get more Maalox on hand in case Ella has more belly pain. She replied with, “Well, from what I understand you are going to be discharged and then you can give your daughter whatever medicine you want.” What kind of response was that? Fortunately, we approached her again when she returned to our room. Instead of being defensive, she apologized and handled it professionally – this turned the situation around. She was great the rest of the day and even complimented us on being great advocates for Ella.

The nurse gave more antibiotics, so I was expecting more discomfort for Ella. Sure enough, we changed the bed several times from diarrhea blowouts. Plus, for the rest of the morning, Ella did not look great. She also spiked a fever of 101.8. She was requiring 2 liters to 2.5 liters to maintain saturation in the mid-90s. A nurse practitioner visited our room and told us that Ella’s right lung showed effusion. This would explain the higher oxygen requirement. However, 30 minutes later she came back and stated that she was looking at another child’s xray.

In the late morning, Dr. Fagan and Dr. Abman’s nurse practitioner came by for a visit and noted the higher oxygen requirement. They thought she might have extra fluid on board from the procedure. It is common for them to administer IV Lasix to help many kids get off the extra fluid. Knowing Ella, this seemed logical. Since everything else was looking good, they gave Tylenol for the fever and wanted to watch her and go get more opinions on the Lasix idea. We told them that Lasix might be a good idea, but we would really like to get labs to see where she is at before giving it to her. At this point, it looked like we’d be staying another night. Since that seemed like the case, we started asking to be switched to the pulmonology service. We did not want to spend another night under the cardiology team.

The remainder of the morning, Ella slept for a few more hours. With the Tylenol, her fever reduced over time. The nurse assistant came to complete the EKG which was normal. Also, it seemed like slowly her oxygen requirement was coming down which was good to see. When I would wean the oxygen, she would do okay but if she got upset, you would have to turn it up right away. She was not able to rebound well. At this point, she was back down to her baseline requirement of 1 liter.

In the early afternoon, the tech came by to do the echocardiogram. She was very experienced and really nice. She understood that Ella was not likely going to like the echo and made sure to just get the pictures she needed. While it was going on, she was showing us the flow of blood in/out of her SVC and commented that there was “good flow”. Heck, it was apparent right on the screen. That was great to see. And although Ella did not like the echocardiogram and still complained, she was tolerating it better than the chest xray and EKG. This told us that she was beginning to feel better.

Ella decided to take another nap and Josh decided to go down the hall and escape in the view. It was about 2:45pm. This time when she went asleep, she was saturating 100 on 1 liter, so I decided to wean the oxygen. I turned it down to 750ccs and waited a few minutes. Her saturations were the same. So, I weaned to 500ccs and waited several minutes. Once again, saturations the same. I was in disbelief. I turned the dial down to 250ccs (1/4 of a liter) and waited. She settled in between 96-98 on saturations and a heart rate between 110-120. She was not ever on 250ccs even in Gainesville at sea level! WOW!

I sent a text to Josh’s phone and told him to come back. He replied, “Good or bad?” I replied, “Good”. He walked in and I pointed to the monitor. He seemed pleased, especially since she was not even looking that good this morning. Then I asked him to go look at the oxygen regulator on the wall. He was in disbelief. We sat there in amazement for several minutes. As a test, we turned off her oxygen to see what would happen. It took about 1 minute for her to go down into the high 80s. Normally, a few days ago, it would only take about 20 seconds to go into the high 70s. Once again, wow!

As we were sitting there enjoying this break, a voice came across the speaker system throughout the entire hospital, “Code Blue in the Cath Lab, Code Blue in the Cath Lab.” For those of you without as much hospital time, code blue meant that a kid was crashing/dying and they were asking for all resources available. Ella was just in the cath lab the day before. Emotions came over both of us and we began to feel sad for the family that was waiting and hearing that message over the speaker. We said a short prayer for that family and at the same time, thanked Him for bringing Ella through her procedure.

Once Ella woke from her nap, she was on 500ccs awake and 250ccs when asleep. The fever had gone away and it seemed like the further away we were from the last dose of antibiotics, the better her tummy was feeling. They came to draw labs; it was Susan, a resource nurse, that was familiar with Ella from our last stay. When she came in and noted the IV, she recommended that we try drawing off of that line. That has never worked for Ella, but we agreed to give it a try. It drew blood so we did not have to poke Ella again. Later, the labs came back looking good and in-line for Ella. Based on a good chest xray, EKG and echocardiogram, plus the fact that her oxygen requirement was lower, they decided to let us come home. Keep in mind too, we never gave her any additional diuretic. They talked about it, but then she improved on her own. We have not seen Ella improve like this before without additional diuretic!

It was about 6:15pm by the time we officially left the building. We were just so glad to not be there anymore! They asked us to watch her bowels and her fever. If either continued into today, her pulmonologist asked us to page him.

Ella still kept me up most of the night – she was up about 10 times. Between doing that Tuesday night, no sleep Wednesday night and very little last night, today consisted of sleeping for me! Fortunately, Ella did great today. She did not have a fever and her stools are returning to normal. She was in a happy mood while she played with Kelly.

We can already see that Ella’s body is responding well to this procedure. We’re so thankful for the miracle of getting her SVC open and hope and pray that lots of good breakthroughs can come from it – like being off of oxygen and medicines sooner. Only time will tell. We also pray that her body will accept the stents and that it will not try to re-occlude through the stents. We were told that is a possibility, so we need to have tests done every so often to check the flow in her SVC to make sure her body is not trying to re-occlude the openings.

Thanks again for all the support and prayers…and for rejoicing with us. We feel that this was the medical miracle that Ella needed to move forward and progress.

Colossians 3:15 (NLT)
And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful.

Posted (jooosh) in All Posts on February-26-2009

and we’ll fill in more of the details tomorrow. Thanks for all the support and prayers. God’s hand has definitely been evident.

EKG Time

Lots O Wires

Trying to hide

Still trying to hide

Dad escaping into the view

Amazing numbers that we’ll describe later

All packed up

Driving home

Posted (jooosh) in All Posts on February-25-2009

Ella is off to sleepy land and the procedure has started. Please pray for a successful opening of her SVC.

Heavenly Father. May your hand be on our precious child and the doctors as they move forward in this procedure. Keep her safe and stable, and guide the hands of all all involved. We pray for no complications, and for success in her SVC being opened up. We trust you in all things Lord Jesus. Amen.

UPDATE 12:40PM (MST) By Josh: We were updated and told that they now have access and are actually starting the procedure. The told us Ella’s access points would be from her inner thigh and each side of her neck. It took a full hour this time, just to get the initial access. Last time, they were able to get access in less than half the time.

UPDATE 1:30PM (MST) By Josh: We were just told that they were able to get a wire through her SVC!!! They have not started dilating the vein yet, or attempting to place a stent, that’s the next step…but this is huge. Praise God!!

UPDATE 2:30PM (MST) By Tina: The nurse called: so far, Ella has been tolerating the procedure. They do have access in her thigh and one point of access on each side of her neck. Since they were able to get access, they have been taking their time to balloon the vein from the top to the bottom, trying to open it up more and more. It is a slow process to open up the vein. Depending on how the ballooning process continues, they may try a stent if they can get it to open up enough. Keep praying for a miracle – – that we can get that stent placed in her vein to keep it open!

UPDATE 3:30PM (MST) By Tina: Praise God!!! Thank you for all the prayers. The nurse just called. Ella has been doing great through the procedure. As of this point, Dr. Fagan has been able to place 2 stents in Ella’s superior vena cava!!! If any of you could see the occlusion and how bad Ella’s SVC looked, this is a miracle! We knew it was a long shot, but we had to try. And everything points to great things for Ella’s little body as she grows. Right now, they are monitoring the stents to see how her body is responding to them (testing various venous pressures in her heart) and they are taking video and pictures. Hopefully by the time they call in the next hour, the procedure will be complete and we will get an update from Dr. Fagan. Mommy and Daddy are a bit in shock right now, but very elated at the news!!!

UPDATE 9:45PM (MST) By Tina: Sorry for the long timeframe between updates. Dr. Fagan came out to explain the procedure and started off by just flat out stating that, “We were very lucky”. Josh quickly interrupted him and said, “Actually, we think it is a miracle”. Dr. Fagan paused and agreed, “Sure, I’ll agree it was a miracle”. He then went on to explain the various techniques that he used to accomplish the task.

Without going into all the detail, he explained concepts like connecting the catheter wires from her leg and her neck in a flossing technique to pull a balloon up through her SVC. One portion of her SVC in the center area was refusing to balloon, so they used a special balloon technique that has the strength of up to 40 atmospheric pressures (e.g. like a rock). It took 24 atmospheric pressures to dilate the vein enough! That is a tremendous amount of pressure used without shredding the vein. Another surprising thing: Ella developed collateral veins over the past 18+ months to compensate for her SVC not being open. They were just below the surface of her skin and you could see them on running along her chest like a maze. As time continued on, they were getting more and more pronounced. Within minutes of the procedure, they were already less pronounced! Overall, Dr. Fagan simply expressed that he was surprised that the procedure was successful.

We went to see Ella in the recovery room. She was just waking up from the anesthesia and was cranky and seemed uncomfortable. She was very fussy and seemed thirsty. Her throat is scratchy from the breathing tube. We knew she was likely hungry since she had not eaten since 3:30am. From there, they opted to admit Ella into the 9th floor, on the cardiac wing. They plan to monitor her overnight and have ordered a chest xray, EKG and echocardiogram in the morning. If all looks well, they plan to let us go home.

Ella will have to return in 6 weeks to have another EKG and echocardiogram. She will be on antibiotics for a short time as well as a daily regiment of aspirin for several months to help her body to not form clots over the stents.

We’re back in one of our timeshare units on the 9th floor, facing the mountains. Hopefully, we can return home tomorrow! For now, we are going to try and get some sleep.

Thanks so much for all the thoughts and prayers today. As you have witnessed, we were “lucky”. We know that God was watching over Ella and guiding and directing Dr. Fagan’s hands during the procedure. And the Lord hears our prayers, so thank you for lifting up Ella to Him on this very important day.

Psalm 145:19 (NIV)
He fulfills the desires of those who fear him;
he hears their cry and saves them.

Posted (Tina) in All Posts on February-24-2009

It was sunny and warm here in Denver today – 65 degrees. So, Ella had a chance to go on a walk and check out the neighborhood!

The day was also filled with her typical therapy exercises: sitting in a bath of pinto beans for tactile stimulation. We’re trying to get her to touch them and feel the beans. Normally, she does not like anything on her hands and will pull away if you initiate anything with her hands.

She tolerated her feeding sessions much better today, an improvement over yesterday. And it is a different child than last week when she was not feeling well. Wow, what a difference. Again, still meltdowns and whining about feeding but her toleration and self-calming was much improved. As I discussed with the OT, I think we just need to go back to basics. She agreed and so we have gone back to some very simple, basic feeding techniques and strategies to get Ella back on track with her eating.

Tonight after 3:30am, Ella will not be able to eat. Normally, her food pumps runs and feeds her continuously till 6:30am. So, I am sure that she will be a bit cranky from lack of food by the time we arrive at the hospital at 9:30am and are waiting for the procedure. Again, the procedure starts at 11:30am and is scheduled to last for 4 hours. We’ll do our best to keep the blog updated as the day unfolds.

We appreciate all the thoughts and prayers for the Bun.

Psalm 71:6 (NIV)
From birth I have relied on you;
you brought me forth from my mother’s womb.
I will ever praise you.

Posted (Tina) in All Posts on February-23-2009

Ella did not sleep great last night, but still seemed to be in a better mood than the week prior.

Kelly tried oral feeding Ella again today, just pears. Of course, she melted down. We took a bit of a break when she was having a tough time with the density of food late last week. So of course, starting up again is really painful. At least the afternoon session was a bit better than the morning session.

The PT session went pretty well too. She is still trying to get the knack of rolling over from her belly to her back. She forgets to lift her arm out of the way, but she is getting close. They also spent some time today in her bath of pinto beans. Again, this is to help Ella with her tactile stimulation.

Ella showed more weight loss this morning, down to 9.27 kilos. The pulmonologist has not answered us back for a couple of weeks now. So we’ve had to exercise our best judgment and move on.

One decision today: since she will not tolerate the increase in the density of food, we are increasing her volume of food to 920ccs, which will put her at about 100ccs per kilo per day. This was always the rule of thumb we’ve used since the NICU days, so I’m sure it is fine. Dr. Perry also thought it would be fine, especially since she will not tolerate the density increase. Hopefully, the extra volume of food will not cause Ella’s lungs too much grief. Plus, we would like to see normal weight gain each week versus weight loss. So far today, the food increase has been tolerated by her belly just fine. That is a good sign. We won’t know the impact of the additional fluid on her lungs and respiratory function for a few days yet.

In addition to the food decision, we also opted to cease her Prevacid prescription. Dr. Perry recommended that we cease it back in early January. When I asked the pulmonologist in late January to confirm, he wanted to wait until her upper GI on Feb 5th. I’ve emailed him and he hasn’t answered back. When we saw Dr. Perry again on Feb 19th, he asked if we had ceased the prescription and again emphasized that even with the GI results, the Prevacid is probably not doing much. So when the prescription ran out last Thursday, we checked the bottle – there were no refills. So, Ella has been off Prevacid since last Thursday and we have not noticed any difference. Again, hopefully these two decisions will not have any adverse impact on the Bun.

We are sure glad to get rid of one medicine. Now, we are down to Captopril, Sildenafil, Reglan, Flovent, Aldactazide, and a multi-vitamin.

One more “normal” day until Ella’s procedure. Just praying for a medical miracle for our baby girl.

Psalm 77:14 (NIV)
You are the God who performs miracles;
you display your power among the peoples.

Posted (Tina) in All Posts on February-22-2009

Ella had a relaxing and smiley day. This is after she slept last night from 10:45pm – 6am straight!!! That was a miracle. It is not normal, but we were both appreciative of the extra zzzzzs.

She was exploring her voice a lot today – she wasn’t saying anything with meaning, but just making lots of loud, strange noises. It’s almost like she was exploring and realizing that she has control over her voice. It must have been entertaining to her because it was constant over several hours. It did make us laugh at several moments.

When we weighed her this morning, she lost a bit of weight and is back down to 9.3 kilos (she was up at 9.5 kilos the other day). We’ll see what happens over the next few days. She has been requiring 1.5 liters of oxygen when she is awake, but ever since we reverted back to 26 k/cal EleCare food, she has been a much happier child. Again, we’re not sure why she is requiring more oxygen but hopefully it is not a bad sign as she prepares for her surgery.

Only a few days until Ella’s procedure. We’re not sure if she will be hospitalized afterward. A lot of it depends on how the procedure goes and if they are successful at placing the stint. At this point, we are packing a bag and preparing for an overnight sleepover at the hospital.

Trying our best to not be anxious about the procedure, but looking to Him for peace.

Philippians 4:6 (NIV)
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Posted (jooosh) in All Posts on February-21-2009

Posted (Tina) in All Posts on February-20-2009

I did not get a chance to talk to Kelly before she headed off for her Friday night plans, so I’m not really sure how Ella did today. From the above pictures, it looks like she enjoyed her physical therapy session.

It was much better last night with Motrin. It is our new friend. Ella only woke up 3 times. That is a miracle and something we do not experience often, so I actually got a decent night’s rest. Unfortunately, we cannot give Motrin over the next several nights because of her upcoming surgical procedure, so we will have to just hope for the best.

I was home this morning when Ella received her monthly synagis shot. She cried really hard and it made me sad for her. She has been poked SO many times in her short little life. But we’re thankful that the insurance covers this very critical injection (a $2,000 shot that Ella takes for 6 months out of the year to prevent Respiratory Syncytial Virus).

We’re looking forward to a low-key weekend. Thanks for all the love and support.

Joy is love exalted; peace is love in repose; patience is love enduring; gentleness is love in society; goodness is love in action; faith is love on the battlefield; meekness is love in school; and self-control is love in training.
— D.L. Moody

Posted (Tina) in All Posts on February-19-2009

Yes, the dense food was the culprit: it was making things over-the-top horrible for Ella. Thanks goodness we figured that out! Ella still woke up throughout the night, but maybe only 10 times versus 15-20. Plus, when she decided to finally get up this morning, she flashed me a smile.

She is still whining a lot throughout the day, but did sit up on her own for 12 whole minutes. We are all convinced that the constant whining is due to teething. The top 4 teeth are working their way through her gums: only one has been successful right now. She always has her hands in her mouth and is drooling a lot.

Our big excitement for the day was going to visit Dr. Perry, her pediatrician. We caught up on everything that has happened with her since early January. He thought she looked great. Ella sat up on the exam table on her own for a few minutes to show Dr. Perry her latest sitting up trick she’s learned. She was smiling and seemed more interactive than he remembers ever seeing her; that made him happy.

Dr. Perry was able to take care of some g-tube maintenance that Ella needed (burning off the granulation tissue). Ella was in a great mood until he went to examine her mouth and take a look at her teeth. She had a major meltdown and then proceeded with her normal whining that she has been doing. He confirmed that it is likely her teeth. Fortunately, he had a sample of Children’s Motrin and told me that it might be more effective than Tylenol (Tylenol didn’t seem to make a difference for her). So, we are going to try it tonight and see if she sleeps better. He also mentioned that after tonight we will have to cease until after her SVC procedure since ibuprofen can thin the blood. He also asked that we keep him updated on the SVC procedure next week and how she does.

Aside from that, he had 3 recommendations: he thinks that we should ask the pulmonologist again about discontinuing the Prevacid as well as her inhaled Flovent treatment. He agreed that her chronic cough is probably tied to the Captopril and isn’t convinced that either one of those meds is gaining her much. Finally, he recommended that we ask the pulmonologist about a fluid increase in her food since she is not gaining weight any more and cannot tolerate the 28 k/cal formula. We plan on going back to see Dr. Perry towards the end of March.

Ella’s other new trick this week: grab her oxygen cord, pinch it off and place it in her mouth like a teething toy!

And last but not least, we want to rejoice with the Bassett family. This family traveled all the way from Dallas to give their baby girl, Olivia, the best chance at life under the care of Dr. David Kays at Shands at the University of Florida. Her case of CDH was severe, but after 3 months in the NICU, she is being released to go home tomorrow!!! We’re so happy for them and wish them the best as they make their way back to Dallas and continue their life with the twins!

Part of my devotion this morning urges us to pray in this regard:

God, despite my circumstances, I will find reasons to praise You.

God, even when I feel disappointed by what life brings, I will trust You to bring good out of bad.

God, no matter what, I will hold on to You and Your truths.

God, my deepest desire is for more of You in me. And if that is the desire of my heart, I will never be disillusioned.