Posted (Tina) in All Posts on August-21-2008

Today was very busy and we’re tired! But I could not go to bed and leave everyone hanging! I will do my best to summarize.

I called The Children’s Hospital the other day and asked when we could schedule the surgery and bronchoscopy. When the phone rang this morning, they were calling to discuss time slots. I was trying to be proactive and get on their schedule. If I talked to Dr. Kays and he advised against surgery, I could always cancel the procedures. They penciled us in for Wednesday, September 3rd.

After leaving a message again for Dr. Kays this morning (I tried to stress that we have been in a holding pattern for 2+ weeks and that I really needed his thoughts), he finally called back this afternoon while I was driving Ella to the hospital. In a nutshell, he agreed with the doctors in Denver that she has a paraesophageal hiatal hernia. He noted that this is not uncommon for CDH patients, especially those that were missing a large part of their diaphragm. As she grows and the diaphragm stretches, one of the side effects can be a hiatal hernia. If she did not have any symptoms, he would hold off on surgery and let her continue to grow and get stronger. But since she is having so many symptoms, he recommends surgery soon. I asked if we held off on surgery and tried to manage her symptoms in other ways, could it heal or get better on its own? He said it will continue to stretch out as she grows and will worsen with time.

I expressed to him that I am nervous about having a surgeon here do the surgery since he knows her so well. He agreed with me because he knows that not that many surgeons here have experience with CDH babies. Also, that this area is right next to her diaphragm patch. At that point, he offered his time if the surgeons in Denver want to call him. He recommended that approach because she is not a straightforward case. He admitted that sometimes it is hard to get one surgeon to call the other, but if we can, he thinks it would be a good idea. Also, he welcomed us to come out to Florida.

The entire time I talked with Dr. Kays (15 minutes) plus the remainder of the drive, Ella cried. She was not consolable. I tried stopping the car and trying all the “normal” things. Nothing seemed to work. So, I just pushed through to the hospital so we could make our appointments.

First, we had the hearing test. By this point, Ella had been crying for 25-30 minutes and was exhausted. So she was asleep. They were able to administer 2 of the tests while she was at rest. One test required her to be alert and awake, which was not going to happen! They did see some things that seemed a bit strange, but since I have never thought she has experienced hearing loss and they did not have the awake test to see how she responded to noise, they deemed the tests inconclusive. They asked that we return in 3 months for a follow-up exam.

Next, we went downstairs to the blood lab. Fortunately, we were placed in a room with a nurse named Joe and he was a good stick. He was able to get into her vein within 2 attempts, which is good on Ella, and draw the necessary blood. It was over quickly. Since it always hurts Ella and she doesn’t enjoy the experience, the shorter the duration, the better. At least it went better than last week – – her arm is still bruised from 2 different nurses poking around several times looking for the vein.

Finally, we had a pulmonology appointment. Josh decided to meet us at the hospital. I was happy to see him because so much is at stake with Ella’s condition and we have some tough decisions to make. I wanted him to be able to interact with Dr. Abman and Dr. Lysinger, so that he could ask questions and we could get the information at the same time.

We had a great visit with both of them – – they are excellent doctors. They took so much time to talk with us and answer all of our questions and concerns. Ella retched during the visit several times and based on her body language, Dr. Abman thinks that she may have reflux occurring (related to the hiatal hernia). The Upper GI did not show refluxing, but that is not a perfect test for reflux (it could still be happening). He reiterated that many of her symptoms with the retching and even her pulmonary condition are likely affected by the hiatal hernia. He advised strongly that we get the surgery done soon.

We expressed that Dr. Kays agreed with the surgeons here in Denver. Dr. Abman admitted that he is biased, but gushed about how great Dr. Partrick is at surgery. This is consistent with what we heard when Ella was in the hospital. Plenty of nurses and doctors had nothing but great things to say about Dr. Partrick. However, Dr. Abman did think a surgical consult would be a good idea. Also, he is going to coordinate to ensure that a cardiac anesthesiologist is present for the procedure, due to her pulmonary hypertension and prior surgical history.

Dr. Abman confirmed that they have scheduled the bronchoscopy for the same time as the surgery. He confirmed that she likely is having some “floppy” muscles around her airway (which is common when babies are intubated for a long time). This could explain why she requires more air during the day than at night (normally our bodies are working harder to breathe when we sleep).

Then, we talked about her labs. Sigh…her BUN is 19 which is not great. We started to worry a bit because when she weighed in on their scale, she was 17 lbs, 4 ounces. Normally, we would jump up and down. But just 2 weeks ago in the hospital when they dried her out, she was around 15 lbs, 6 ounces. Ella gains true weight slowly. And even though Dr. Perry increased her food 100ccs over the past week (more fluid intake), there is no way that she gained nearly 2 pounds in 2 weeks. So, maybe she is getting some pulmonary edema again. That would certainly explain some of the extra oxygen requirement and heart rate going faster. Also, her potassium was low so they gave us a prescription to administer it to her at home for the next week.

In preparation for surgery (which is less than 2 weeks), I asked if we should do labs again next week. I certainly want her respiratory status to be good before she undergoes a major procedure. Even though they do not have clinic hours next week, Dr. Lysinger made an appointment just to see Ella. I thought that was really cool. So, we are going to the hospital next Thursday again for labs and a follow-up appointment to weigh her, check to see if she is getting wet, dry or staying the same along with her potassium levels.

Dr. Abman noted that Ella has not shown signs of pulmonary hypertension and stated that a side effect of the sildenafil could be an increased heart rate when it is paired with bumex. Since both of those scripts have been increased, that might be a cause too. So, he cut her sildenafil down 33% (a third less).

Josh asked specifically if there was anything else that we could do in the mean time to make Ella more comfortable, but something that would not have extreme side effects. We expressed how well Ella seemed to do when taking the steroids, but we know those have extreme side effects. So, they decided to place her on a inhaler of Flovent. So, now twice per day we have to use this inhaler with a spacer and mask. Tomorrow will be the first time we try that method. But because it is an inhaled steroid, very little is absorbed into the blood. So the side effect is minimal but it might help open her airway and make her more comfortable, especially prior to the surgery.

When we left, Josh and I both felt confirmed that Ella is supposed to have this surgery…and that she is supposed to have it here in Denver. On the one hand, we are nervous and it is scary but we know that the Lord will be with her and that He has a plan for her.

The title of the post might have thrown you for a loop. Today is the first day that Ella ever made noise in syllables. She kept trying “duh, duh, duh”. Before she would make noise, but it was a more continuous noise like she was testing her vocal cords. This was a more intentional noise, “duh, duh”. Admittedly, it made our hearts melt. She is normally so quiet; it is so good to hear her trying to make more noise.

Psalm 27:14
Wait for the LORD;
be strong and take heart
and wait for the LORD.

This has been our frame of mind for the past weeks. We have been actively seeking Him…waiting for an answer on the next steps for Ella…waiting on the next steps for me and if I should secure a job…waiting for God’s timing and for him to tell us “yes”, “no” or “wait”. Recently, it has just been “wait”. So although not everything has been uncovered, the reality of the Bun having surgery on September 3rd has hit home. Once again, trusting in Him and His plan and provision for this beautiful miracle He placed in our life.

Please pray that Ella will be able to maintain and get stronger for her upcoming surgery. Also, that we can coordinate a surgical consult; we feel that is important.

Finally, for us to be steadfast in Him. These next couple of weeks will be tough in many respects and the thought of seeing our baby girl endure more major surgical procedures is not a fun thought. Our journey has resonated with the truth that He is in absolute control and ordains all of our circumstances. We want to cling tightly to that truth as we enter into the next valley and always be aware that He is working around us all the time; we just have to look beyond our immediate perspective to see how he can take a painful situation and turn it into good for His glory.

Posted (Tina) in All Posts on August-20-2008

We did not hear from Dr. Kays today which is a big bummer. I’m hoping tomorrow is the magic day.

Ella and I will be spending a majority of the day at The Children’s Hospital. She needs blood lab work done again, so we will be heading to get that done first. Once we finish, she has a hearing test scheduled. This is a follow-up to the initial one performed in the NICU at Shands which she passed. Babies that have been on ECMO are more likely to have hearing loss, so it is something that we always have to test regularly. Finally, we have an appointment with the pulmonology department. We have not spoken since the recent hospital stay. It will be interesting to hear their perspective on Ella’s current state.

I tried to wean Ella’s oxygen today around 2pm and watched closely. The change is not immediate, but within 2 hours, the pulse oximeter was beeping almost constantly. Her saturation is fine, but her heart rate is set to alarm at 180 or higher. So, I increased her oxygen back to 2 liters and within several minutes, her heart rate decreased. Once again, not sure why her heart rate is so elevated except that it seems that when she is working harder, her heart rate is higher.

We met a nurse today from the home health care agency; they sent her to see if it was a match for both parties. Unfortunately there was no chemistry. It was not a good match. I tried to be open and we met for about an hour. One of my biggest complaints: she never washed her hands! For those of you out there that are not in the medical field, a professional that knows they are going to be around a medically fragile infant should always walk in your home and immediately go to a washing station to de-cootie themselves. Anyway, that was a bummer that it was not a match. We’re hoping that they have someone else that might be a better match.

There are two other CDH babies that entered the world over the last two days. One has already passed and the other is still fighting for her life on ECMO. It is not important to know their names or details, but please say a prayer that the Lord would wrap these babies and their parents gently in His love.

It was not that long ago when we were walking a similar path. Today, one year ago, Ella had her repair surgery.

Most would have thought the worst was over and things would slowly get better. We had no idea that we were in for 5+ more months in the NICU. And yet, here she is today. Not feeling 100% well, but still smiling.

As always, just trusting in the Lord for His perfect timing and provision. If nothing else, this journey has taught us to seek, obey, and leave the consequences to Him.

Colossians 1:10-12
And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light.

Posted (Tina) in All Posts on August-19-2008

Ella stayed on course today: 2 liters of oxygen in order to maintain her saturations and heart rate.

Our pulmonology appointment is this Thursday at 3pm.  We’re hoping to get some answers!  This waiting game is not fun.

We heard from Dr.Kays today via email.  Unfortunately, we had some technical difficulties and he was not able to see the upper GI images.  So, I re-sent everything this morning and hope to hear back from him tomorrow.  Based on the weather report, I hope that everyone in Gainesville stays safe – – there is a tropical storm that may become a hurricane in Florida right now.

We have been trying for several weeks to find a home health care agency that would provide private duty nursing.  Initially, our insurance company has approved 20 hours per week.  However, there is such a shortage of nurses, especially in Colorado.  We called eight different home health care agencies and none of them could help us.  One positive thing about being in the hospital: the case manager called the top rated home health care agency and now, they think they can staff a nurse.  The director of nursing is going to come by and meet me and Ella on Friday afternoon.  Please pray that will come through for us.  It would be so nice to have that type of support, even if it is simply short term.

Also, please join us in praying for the right family for our rental home.  It has been vacant since early June.  The traffic was better in July, yet this month has been slow.

It’s so hard to see Ella in a place where you know something is wrong and yet, there does not seem to be any urgency on behalf of the doctors. So, we’re just daily trying to trust in the Lord for his timing, purpose and plan to be revealed.

Thank you for all the support and prayers – it means a lot.

Posted (Tina) in All Posts on August-18-2008

Ella had a pretty good day.

We met her new PT from the Early Intervention Program. When I opened the door to greet her, there was a man with her. I found out that they are a husband/wife team. I certainly did not expect two PTs, but that was a nice surprise. Things seemed to go smoothly, so I’m hoping that we have found a permanent, long-term match. If things go well on their end, there is a chance that they may start accepting our insurance. They will know in the next month or so. That would be great because it means that Ella would not be forced to use different PT therapists (one from Early Intervention and more frequent visits for a PT that accepts our health insurance). Only time will tell…

Ella is still requiring 2 liters of oxygen. It seems like her congestion is steadily getting worse. Her secretions are getting tougher and tougher to manage and thus, the retching has increased again. She retched 6 times, just during one episode in front of the PT this morning. I am sure anxious for the bronchoscopy. I want to know where these secretions are coming from and if there is something else we can give her to help, especially to eliminate the retching. We are back to 10-25 times per day. Before our last trip to the hospital, there were days where she retched 40 times in one day. We are not quite at that level, but pretty close.

We still did not hear from Dr. Kays. I sent another email tonight, letting him know that I was still waiting for his thoughts. He knew I wanted his thoughts when Ella was in the hospital before his vacation, but he didn’t have time. So, I just wanted to be clear that we still want his professional opinion.

Even though we have not heard from Dr. Kays yet, we are exploring the surgery schedule at the Children’s Hospital. I would really like to hear from him, but at the same time, waiting is getting old. We need to take the next steps for Ella, so we have more information to treat her and her symptoms lessen. I am hoping to hear back from the Children’s Hospital tomorrow. And of course, still hoping that Dr. Kays will answer us back too.

Shush…shhh….shhh. As I quiet my spirit, I hear this truth: His timing is perfect. So, I’m taking a deep breath, trying to be still and letting the truth resonate my spirit: He is God. He is in absolute control of every detail in our lives.

Psalm 46:10
Be still and know that I am God.

Posted (Josh) in All Posts on August-17-2008

Ella’s still seems about the same.

Until we can get the broncoscopy and surgery completed, we feel like we’re in a holding pattern. Ella is still requiring 2 liters of oxygen, has an elevated heart rate, is trying her best to deal with secretions via coughing and retching. We can’t try any oral food therapy. You can tell that she doesn’t feel great, so you hate to push her hard with physical therapy. Maybe the pulmonolgy appointment on Thursday will provide more insight, but we’ve been led to believe that they really need the broncoscopy to further diagnose what might be going on and how to further treat her symptoms.

We’re anxious to hear from Dr. Kays. He’s supposed to be back at work tomorrow. We just want his opinion on the proposed surgery and to see if a doctor-to-doctor consult is recommended.

The highlight of the day was Grandpa visiting and treating us to Mexican food for lunch while the Bun consumed her Alimentum. And of course, Ella resting on me was pretty cute too.

Also of note: Today was a bit of a special day. It marks the time in my life when I have now spent more time with Tina than without her. I was 17 years, 11 months, and 13 days old when I asked her to be my girlfriend. Today, Tina and I have been together 17 years, 11 months, and 14 days.

Praise God for all He does and continues to do in our lives.

Psalm 71:14
But as for me, I will always have hope;
I will praise you more and more.

Posted (Josh) in All Posts on August-16-2008

Ella is continuing to require 2 liters of O2 to maintain her saturations and a manageable heart rate. She exceeded 180bpm a few times this afternoon, but she mostly hovered between 150 – 160bpm. When she was sleeping last night, her heart rate fell closer to her previous baseline of around 115bpm. It seems that her tachycardic episodes are really occurring during the times she is awake.

Ella also had a few retching episodes today. These moments have been less frequent than the week before she entered the hospital, but even a few times a day is too much in my mind.

We hope to get more insight into Ella’s respiratory issues once she has a bronchoscopy performed. We’re planning to have this done at the same time she has the surgery to repair her hiatal hernia.

Even with her elevated heart rate and increased O2, you can see by the pictures that Ella is looking and behaving ok clinically.

While Tina was out, the Bun and I enjoyed some cuddle time together and I even got her laughing pretty good with some tickling.

We also had a college friend of ours stop by to see us and our girl. Ella made a point to bake her a patty cake.

Ella’s day of surgery is looming, but still not set in stone. I’m not trying to focus on it too much until it gets here. We know that we can trust the Lord in all things. The journey we have been on over this last year leaves us no doubt. Praise God for where He has us.

James 1:2-4 (New Living Translation)
Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Posted (Tina) in All Posts on August-15-2008

Ella seemed more fussy today.

When we woke up, her numbers looked good on 1 liter of oxygen, which is what she slept with overnight. But within 1-2 hours of her being awake and trying to breathe, her heart rate increased and saturation decreased. Sure enough, I increased her to 2 liters and she has been stable, no different than the past 2 days.

She has been more fussy – I can tell because it is hard to get a smile when she doesn’t feel great. Also, she seems to have a lot of secretions that she is trying to manage. The secretions started a few days ago and seem to be getting worse. This does not make a lot of sense considering that her labs on Tuesday showed that she is very dry and does not have any pulmonary edema. But wherever the secretions are coming from, they are making her retch again, hard. That can’t feel good, so I’m not surprised that she is fussy.

It has been hard to get her to take naps today. She just seems extra fussy and uncomfortable. That is not a good sign, so I’m hoping that things do not worsen over the weekend, when less doctors are around.

Still looking forward to Dr. Kays returning on Monday to see if we can get an answer from him. I know he is going to be slammed when he returns, but I’m still hoping we will hear from him on Monday or Tuesday of next week.

We will be meeting our new PT on Monday morning. Although Ella will not be up for much work, I figured that she could come to meet Ella and take down her history. It’s always time consuming to start services with a new therapist, so I figured that I would get the ball rolling now. Our new OT called us too and has the first evaluation scheduled for Thurs, Aug 28th. So slowly but surely, those services from the Early Intervention Program will be in place. If you remember, we were only approved for services 1x per week for OT and 1x per week of PT. So we are still trying to also get OT and PT assigned through our insurance benefits too. Although it is not ideal to have multiple therapists, the more therapy, the better. We have so much catching up to do!

Please pray that Ella will improve over the weekend, and if nothing else, that we can continue to keep her comfortable until our pulmonology appointment next week.

Psalm 55:22
Cast your cares on the LORD and he will sustain you; he will never let the righteous fall.

UPDATE 8:45pm MST: Ella finally took a really long nap, like 3 hours long. She woke up with a smile. Praise God! Oh, and any thoughts on my fortune?

Posted (Tina) in All Posts on August-14-2008

Unfortunately, Ella is about the same.

Last night while she was sleeping, we were able to adjust her down to 1 liter of oxygen. Her heart rate was mostly between 125-135 which is manageable (still higher than normal).

Once she was awake, the 1 liter of oxygen was not enough. Within 30 minutes, her saturation went down to low 90s and her heart rate was up around 185. This is way too high and basically the same as yesterday.

When I spoke to Dr. Perry, I explained what was going on and he could hear the alarm from her pulse oximeter going off in the background. He noted that she might need more oxygen while she is awake and to go ahead and keep her comfortable, especially if the extra oxygen would help her heart rate to decline.

I tried 1.5 liters but it did not seem to make a difference. Once I switched her to 2 liters and waited, her saturation was 99-100% and her heart rate when resting went down to 150ish. This is more manageable.

Dr. Perry thinks that although her condition has persisted, we should sit tight and give her the O2 she requires to keep her comfortable. If she becomes fussy or exhibits other signs of distress or requires more oxygen than 2 liters, he wants us to call back. Otherwise, we will just plan to go to the pulmonology clinic at our normal scheduled appointment next Thursday at 3pm.

So even though Ella is “dry”, she did retch a few times today. Also, she still is requiring more oxygen even though she does not have pulmonary edema. The steroids made a huge difference for her last week. And somehow over the past 2 months, things are different for Ella. She seemed to be stable 24/7 on way less oxygen; not different amounts of oxygen at night versus the daytime. We were also at sea level. She was not retching post NICU in Florida the way she has since we have been home in Denver, but she also got more “wet”.

I may have mentioned last week that they want to do a bronchoscopy. Since Ella would need to go under general anesthesia, they want to do this procedure at the same time as her hiatal hernia surgery. Bronchoscopy is a procedure that allows the pulmonologist to look at the airway through a thin viewing instrument called a bronchoscope. During a bronchoscopy, they will examine Ella’s throat, larynx, trachea, and lower airways.

The pulmonologist last week mentioned that when they did the swallow study, that Ella’s epiglottis does not function properly to help avoid aspiration. Your body has one other built-in feature to help avoid aspiration and that is the muscles around your vocal cords. From her clinical signs, they think that Ella might have weak muscles around her vocal cords too, likely from being intubated for so long. This could explain difficulty swallowing, working harder to breathe (if the muscles are floppy and don’t contract properly, it blocks the airway), retching, etc. Also, it might mean that Ella could be micro-aspirating or is at greater risk to aspirate. So, they have not given us the thumbs up to move forward with any oral feeding until this test is complete.

This is another reason we are anxious for Dr. Kays opinion, so that we can figure out when to schedule the bronchoscopy and hiatal hernia surgery. Without these procedures completed, we cannot move forward with any feeding therapies.

It’s just hard to sit each day and wait for an entire week. We know something isn’t right because she is not really stable unless she is on 2 liters of oxygen when she is awake and 1 liter when she is asleep.

Please pray for the Bun and her comfort. Also, that her respiratory status would improve in the coming days. Finally, that we will be given wisdom on the right procedures for Ella and these latest medical challenges.

Nahum 1:7
The LORD is good,
a refuge in times of trouble.
He cares for those who trust in him.

Posted (Tina) in All Posts on August-13-2008

Yes, tachycardiac means rapid heart rate. I don’t normally post in the middle of the day, but felt it was worth letting everyone know where we stand. So, if these events seem sudden, you may want to catch up by reading last night’s post.

The night was okay except that her alarm was going off intermittently due to an elevated heart rate. I noted this before going to bed and when the alarm would go off throughout the night, I knew before walking into her room, that her heart rate was the culprit.

It is strange to see such a high heart rate. She was on 1 – 1.5 liters when I put her to bed. It is tough to know the exact amount because the dial on the oxygen concentrator. Since it goes up to 5+ liters, the lines of differentiation even between 1-2 liters are slight.

She leaked out of her diaper this morning, so I guess she had good urine output. After cleaning up her bed and changing her, I laid her back down. She seemed fussy. Her heart rate was around 175. As soon as I laid her back down at 8am, she went back to sleep for another 1.5 hours. While she was fast asleep, I would peek in at her. Her saturation was fine, 98-100 but her heart rate was around 155. It stayed this way all last night and is higher than her baseline.

When I woke her up at 9:30am, she was acting like she didn’t feel great. As I brought her downstairs, I kept the pulse oximeter attached to her because I felt like I needed to watch her closer today. Also, since the oxygen concentrator was not exact enough for me and I couldn’t tell exactly how much O2 she was getting, I switched to the portable oxygen tank.

Around 9:45am after she had eaten, she was on 1 liter and her saturation dropped to the low 90s and her heart rate was fluctuating between 185-205. There is no half marks on the regulator, so I increased her from 1 liter to 2 liters. That seemed to help decrease her heart rate, but it is still too high.

Later around 12:15pm, when she was down to a heart rate of 145-165 while just laying there watching a video, I tried taking her back down to 1 liter. Within 30 minutes, she was back saturating in the low 90s with her heart rate at 185. So for whatever reason, I have to believe that extra oxygen is helping her work a bit less.

Besides watching her like a hawk, I have spent most of the morning on the phone. I called the pharmacy checking her sildenafil that was refilled a while back. This was Josh’s idea. I asked if the properties of the compound could break down at all. In other words, was her med not working right? I wanted them to verify that they mixed it correctly and to let me know if the sildenafil could break down. For example, there was about an 8 hour period where it was not refrigerated. Would that affect it? Basically, the pharmacy stated that the prescription should be fine, it would take much longer to break down.

Well, that was one variable out of the way. I called to run her symptoms by someone at Cherry Creek Pediatrics (Dr. Perry does not work on Wednesdays). The triage nurse looked for another doctor around the office, for an opinion. Meanwhile, Dr. Perry called my home number. He told me that he would call regarding her food intake, as a f/u to our appointment yesterday. But I thought he called because the office informed him of her status. Instead, it was pure coincidence that he called this morning while all of this was going on.

I gave him all my thoughts, including the only variables that have changed are using our meds at home (but that the pharmacy was confident our meds were ok) and that we stopped the steroids. Also, I told him that I could hear congestion in her throat this morning for the first time since last Tuesday, when they gave her the megadose of diuretics. And therefore, she has had 4 episodes of retching, one where she spit up water she recently drank. This is the first time she has retched in a week. I hope the nissen isn’t causing more problems. We are trying to be patient and wait for Dr. Kays to come back from the Cayman Islands. Dr. Perry told me to hang tight – he wanted to call the pulmonologists at the Children’s Hospital.

He called back after talking with Dr. Kerby, one of the pulmonologists that watched Ella last week in the hospital. They reviewed everything and sure enough, they are all scratching her heads. This should make Dr. Kays feel better – – it is not just him. Ella is just not textbook about anything!

All her labs look fine and based on her clinical signs, they just want us to watch her closely over the next 24 hours. Dr. Kerby said that sometimes there can be a rebound effect once you stop the steroid treatment. Although nothing really points to why her heart rate would be elevated.

As long as we are able to work with 2 liters and below, they are fine with us managing the problem from home and not at the hospital. If things worsen and she requires more than 2 liters, I am directed to call the pulmonology clinic at the hospital directly. Otherwise, Dr. Perry and I plan on talking in the morning. If the elevated heart rate has persisted and not gotten better by tomorrow morning, they will likely see if they can fit me into a slot in the outpatient pulmonology clinic.

As far as food and his caloric calculations, Dr. Perry thinks she needs more calories. This is consistent with the evaluation from the nutritionist that came to our home. He reviewed the calculations that the nutritionist provided from the hospital and noted that they were off. Rather than increase the density of the food, he wants to increase her fluid intake. He feels okay doing that considering how dry she is with the BUN being 29. So, we are going to increase her food intake by 20ccs each day for the next 5 days. This will give her more calories to help with true weight gain. Let’s hope Ella tolerates it!

Right now, it is around 2:30pm and Ella is taking a little snooze. She is on 2 liters and her heart rate is fluctuating between 125-145, which is better to see. Again, this is still higher than normal, plus she is on a lot more oxygen.

Please say a prayer for Ella today…that she would feel better…that the doctors will be able to figure out what is plaguing her little body.

And as a side note, Josh missed his flight last night, so he had to wake up at 4am this morning to catch the earliest flight and then drive straight to work. So we haven’t seen Dad at home yet, but we should this evening.

Posted (Tina) in All Posts on August-12-2008

Our day seemed to pass quickly.

In the afternoon, we headed to the Children’s Hospital for lab work. It took a second nurse to try sticking Ella. Yuk – – I just hate having that done. And Ella can spot it coming and she holds her breath and cries really hard. She has been stuck so much in the past week or so. Her feet, hands and arms are bruised from needles. Fortunately, we get a little break. The next time we need labs will be a week from Thursday, on August 21st.

Her labs from today looked good. Last week, they had to give her more potassium. But today, everything was in normal range and her BUN was 29. So, she is staying dry. Along those lines, we have not had a single retch in days. I had never made the association of retching with her pulmonary edema status (being wet or dry), but I think the two are closely tied together.

We visited with Dr. Perry this afternoon. He had been out of town since last Tuesday and so we were catching up on all the details. Ella decided to take a snooze while we were talking about everything.

We have two conflicting reports on nutrition, one from the independent consultant that came to our home 2 weeks ago, the other from the nutritionist at the hospital. One thinks she needs more calories, the other thinks everything right now is fine. Dr. Perry is going to do his own calorie calculations and get back to me in a couple of days.

Tomorrow, there is a case manager coming to evaluate Ella to see if she can qualify for the Medicaid waiver program (qualify for Medicaid based on her own income which is zero). The wait list is 1.5 years, but first they send someone to verify and make sure that she qualifies based on her medical condition.

Ella enjoys playing with her oxygen tubing. Quite honestly, I’m not sure what she will do someday without the tubing!

Speaking of oxygen, I tried weaning Ella down to 750ccs last night. She seemed to be okay while sleeping so I left it overnight. Throughout the day, she almost seemed like she might need more, but her color was okay and she was behaving fine, so I left it. When we were at Dr. Perry’s, they tracked her at 96-97% saturation and heart rate between 155-165. That is so much higher than what it had been previously.

When I got home, I tried putting her to bed at 750ccs, but her heart rate seemed to be high. So, I tried increasing the oxygen. Right now, she is at least a liter, closer to 1.5 liters (tough to read the exact amount on the concentrator we have right now). However, her heart rate is still high. I’m not sure why it is so much higher, even compared to the last several days. Maybe keeping her on a lower oxygen amount for too long is causing her some grief? Typically, a raised heart rate simply means a fever or that she is working too hard. Right now, she does not have a fever so I am left to believe that she might be working too hard. It is such a guessing game – finding the right oxygen level.

But we know that God has a plan. Some days it is hard to remember that truth.

Psalm 145:8-9
The LORD is gracious and compassionate, slow to anger and rich in love. The LORD is good to all; He has compassion on all He has made.