It was a warm and beautiful day as we headed to the Children’s Hospital. Our first stop was radiology. When we checked-in for the chest xray, the order was expired in the system. So, we had to call cardiology and get them to place another order in the system. Once they took us back, Ella could tell that she was not going to like this activity. I taught the xray techs as much as I could about how to handle Ella. For example, increase oxygen, if she holds her breath to blow on her face, do the xray as quickly as you can, etc. (I could not be in the room since I’m pregnant). It was torture to just hear her melting down on the other side of the door, knowing that she was with 2 strangers that do not know how to handle her. Fortunately, they were pretty quick but by the time I got to her, she was sweaty, retching and having a tough time breathing. After about 10 minutes of consoling, she calmed down.

We went up to cardiology for our appointment at 11am. At 11:20am, they called us back and wanted to do some of the basic things – blood pressure, weight, height, saturation, etc. The good news is that her blood pressure was great – 111 over 67. This means that her body has adjusted fine without the Captopril. When the nurse went to get her height, Ella lost it again. Then, she wanted me to strip her for a weight. I convinced her to use the weight from our scale this morning. Due to Ella’s behavior, she conceded. Then, we went back to a room. We waited in there an additional 40 minutes! Ella was worn out from the drama, so she fell asleep on me.

The knock at the door was to take her across the hall to get an echocardiogram. I knew she was not going to tolerate this procedure either and now, I had to wake her up from beauty sleep! As soon as I laid her on the table, she lost it! The tech seemed new and somewhat green, which is not the best for a child like Ella since she is tough. The tech was not able to get the images of her SVC to see the flow. After 10 minutes (keep in mind that Ella is screaming, retching on & off, and sweating profusely), the tech stated that she was going to go let the doctor know that she could not get the images and see what he wanted to do.

Dr. Fagan came into the room. It was good to see him, although hard to have a great conversation with him because Ella was still screaming her loudest. The tech tried again to get the images while Dr. Fagan watched. After about 5 minutes, he finally told the tech to stop trying and admitted that these images are hard to get anyway.

Over Ella’s crying, we discussed her progress and how she has been doing clinically. He admitted that he was skeptical about the type of impact this would have for Ella, but now he clearly sees that it has made a big difference. I thanked him over and over. He does want her to stay on a regiment of aspirin daily until further notice. Since the echocardiogram really did not give him the info he wanted, he just told us to keep watching her clinically. If we notice any changes, come back and see him. Otherwise, the body is known to clot the stents so we will want to try and check them in a year from now (you can have very subtle changes over a long period of time that may be hard for us to notice). He emphasized that because of the common occurrence of clotting in stents combined with Ella’s history, it is likely that we will need to have her go back to the heart cath lab sometime in the future.

Considering all the drama from Ella, it is a bummer that we did not get more conclusive information. For now, we are just going to keep a close eye on her clinically. Since we got a satisfactory report from Dr. Fagan, this means that in the upcoming weeks, we may be able to try and wean her diuretic. That decision will come from Dr. Abman, her pulmonologist. Reducing medicines for Ella is a good thing and something we definitely want to keep pursuing as the weeks and months pass.

Right now, we do not have another doctor appointment scheduled until the end of May or first week of June. Excited for the break!

After the hospital, Ella had a good PT session. Kelly also tried feeding her, but she only took a few bites and then melted down. Aside from her nap on my lap at the hospital this morning, she has not had any other beauty sleep. Maybe this means that she will go to sleep before 11pm tonight. We can only hope!

I think about the baby all the time. I guess it’s hard not to when you are carrying it with you every moment of every day. But this verse provided comfort to me today and just brought the clear reminder that He can sustain us through whatever we experience in this lifetime.

Isaiah 43:2 (NLT)
When you go through deep waters,
I will be with you.
When you go through rivers of difficulty,
you will not drown.
When you walk through the fire of oppression,
you will not be burned up;
the flames will not consume you.