Posted (Tina) in All Posts on June-9-2009

Wow, it was a long day at the hospital. We left at 9:15am and returned at 5pm.

First, we visited cardiology for the echocardiogram. When they were doing initial stats, we learned that Ella got a bit taller. She is now 32″ long. When discussing the upcoming echo, I warned the nurse that we should order the sedation because there was a good chance that Ella might need it.

When the nurse left the room, I could smell that I needed to change Ella’s diaper. I went to change her diaper, got out a new one, changed her needing to using several wipes and as soon as I went to fasten the diaper, Ella decided to go a 2nd time. It was messy and smelly, but thankfully it was in an exam room and all of this happened before the echo started.

We switched rooms and met the echo technician. She seemed very experienced and started out by placing the stickers on Ella’s chest. As soon as that process started, Ella melted down. As I have been describing on the blog, she held her breath and it only took about 5-7 seconds for her to desaturate down to 53! I had been describing this to the nursing staff, so I was glad to have an eyewitness. I blew on Ella’s face to get her to take a breath and we avoided her passing out. I think we also avoided it because I cranked her oxygen to 4 liters! I had to place her oxygen that high to get her to come back to a reasonable place and then weaned down to 2 liters and left it there for the procedure.

I wanted to try the echo without sedation, but had a suspicion that we might need it. Our echo tech suggested that I climb on the table next to Ella. I explained that would not likely soothe Ella, but asked if I could hold her. She said that she could make that work. I have never seen an echo done while Ella was sitting up, so I knew that this technician had lots of experience for which I was thankful.

Ella fussed a few times, but nothing major. Then in the middle of the echo, she decided that the tech wasn’t going to hurt her and started smiling and watching the screen with all her heart information. I was so surprised – Ella did great. I know it is because I was holding her – but still – I thought she would let me know that this was not her decision to have this procedure done. So, the great news is that we did not have to use any sedation. And I never knew that an echo could be performed with her sitting up, so I will request that in the future.

Once we left cardiology, we went down to the cafeteria to grab a bite to eat. We met a friend that works at the hospital and has watched Ella on the blog over the past several months. It was nice to have some company while we ate lunch. Then, it was Ella’s turn to eat lunch, so out came the syringe! Once she was full, she got cranky and finally dozed off to sleep. After a 30 minute rest, we had to go back upstairs to meet with the pulmonologist.

While she was in the office, Ella was on 1 liter of oxygen. They hooked up the pulse oximeter to watch while we discussed her latest condition. Her saturation fluctuated, but mostly stayed between 91-93. Dr. Abman noted that this was a higher O2 requirement than last time.

When we described the meltdowns that are result in her passing out, his first thought is that her pulmonary hypertension might have gotten worse. But, he reviewed the echo results and stated that the pulmonary hypertension is not worse; it’s about the same as the last echo. However, I did remind him that she spent nearly 6 months in the NICU before they determined that she had pulmonary hypertension. None of the echocardiograms showed the pulmonary hypertension, but she still had it. Even last October, they thought she maybe didn’t have it and discontinued the medicine for that condition, and then Ella ended up in the PICU. So, although echocardiograms often show that Ella’s pulmonary hypertension is being managed, she still has it. He agreed that echocardiograms cannot be the only measure used for diagnosing pulmonary hypertension in Ella.

I shared that we think it might be that she needs an increase in her pulmonary hypertension medicine, Sildenafil. The last time that Ella showed signs like this was back in the NICU before she started taking Sildenafil and last fall when they temporarily ceased giving her Sildenafil. Dr. Abman wasn’t planning to recommend an increase in her medicine, but since she is already on the medication and he trusts our instincts, he wrote a new prescription to weight-adjust the dosage.

He hasn’t ruled out that it is not a fluid issue, so he also ordered a chest xray. He wants to compare it to the last one on 4/25/09, to see if it looks the same or worse. He thinks that the diuretic should be weight-adjusted too, to make sure that it is not a fluid issue.

Once we were done with the appointment, we went downstairs to radiology. I figured we had already spent the whole day at the hospital, so why not get the chest xray now and spend even more time? Ella cried a lot during the xray, but overall, it wasn’t too bad.

Now that we are home, we are going to increase the Sildenafil for a few days to see if Ella is still having extreme meltdowns and/or is still requiring the higher amount of oxygen. If that doesn’t improve things, then we will increase her diuretic a few days from now.

We are supposed to have a phone conversation with her pulmonologist in one week from today. If both of those medicines don’t seem to help within the next week, we may have to go back to the hospital for further diagnosis. The next steps would either be another echo where they take away Ella’s oxygen momentarily during the echo to try and replicate her episodes and document what happens with her heart and lungs. Or they may decide to put Ella in the heart cath lab again under Dr. Fagan (the doctor who placed her stents), so he can accurately measure the the pulmonary pressure and assess if fluid is playing a part.

We’re hoping that it might just be the Sildenafil medicine that needed to be weight-adjusted. We actually don’t think it is fluid retention and would like to see her diuretic discontinued. So, the next week will be very telling.

Please say a prayer for the Bun…we’d love to know that just a simple increase in medicine would put her back in a place of comfort, decrease her O2 requirement and give her some more room to breathe when she gets upset without passing out.

Luke 1:50 (NIV)
His mercy extends to those who fear him,
from generation to generation.

The Williams on June 9th, 2009 at 7:27 pm #

Wow… what a long day for you and Ella. Sounds like it was very productive day. Love ya!

Joel Snyder on June 10th, 2009 at 3:05 am #

Ella, What a full day for you and Mom at the hospital. It sounds like you might get the answers or eliminate some of the mystery with your condition. I am praying that it is just medication and you can get back on track. Tina I bet you are tired what a full day that was for you. I hope things settle down and you can get some rest. I will catch you later. Love,Grandpa!!!!!!!!!!!!!!!

Laura Huene on June 11th, 2009 at 7:47 pm #

What a day you had…I will pray the meds help her feel better. You are an amazing mother!

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