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

I wanted to start out by showing some pictures from a few days ago. Although she needs assistance to sit or stand up, she has started to hang on to the side of her pack-n-play, balancing herself. Such a big girl! These were taken just last week, after her Auntie Shannon came to stay with us overnight for a visit.

Thank goodness that Josh just happened to roll over and check on the time this morning. It was 5am and we were supposed to leave at 5:15am. Although the alarm was set for 4:30am, the volume was all the way turned down. We were pretty much packed from the night before, so all went pretty smoothly and we left the house at 5:30am. We took the toll road so we would arrive on time. Ella was tired and not crying much. I think she was too tired to process what was happening. Plus, she was in the car. She still loves to ride in the car.

After check-in at the front desk, we were escorted to the heart cath lab pre-op area. There we met our nurse who has been fabulous all morning. We’ve met a lot of nurses during Ella’s short life and this nurse has amazing bedside manner. That has helped because although we have been through this before, the truth remains: this process does not get any easier. Moreover, we’re really tired.

I was amazed that Ella has gained weight over the past 7 weeks. She feels heavy to me, but then again, she always does these days. And since we’ve held off on weighing her regularly with our home scale, I wasn’t sure. She went from 25.5 pounds to 28 pounds this morning. We have not increased her food intake or calories, so I’m not sure. It is a bit concerning and I’m wondering if any of it is fluid-related. During her 2 year check-up at the end of July, her pediatrician told me that he wants her to be 29 or 30 pounds by next summer when she turns 3 years old. Hmmm…We’ll see if any of it is fluid-related over the next few days. If not, I think weight gain is good, but we also don’t want her to gain more than she should either.

We gave Ella some versed to sedate her and make her sleepy while we were consenting to the procedure and talking with the cardiologist, anesthesiologist, and nurses. That helped, but when I walked her into the heart cath lab around 7:45am, she knew enough to know that she did not want to be here. It took a few minutes of the mask with the inhaled anesthesia to make her go out enough. In the meantime, the nurses were surprised that she was screaming and fighting as best as she could, even with the sedation. It didn’t surprise me – I just confirmed that she is a little fighter and that fiesty spirit is probably one of the reasons that she is still here.

Dr. Fagan talked about going in and checking pressures. They may use a cutting balloon to get rid of some of the scar tissue build-up. Once they see the whole picture, they may also decide to re-stent. Ella currently has mesh stents, but he stated that they might use a covered stent. This may help the SVC to remain open and prevent some of the scar tissue build-up going forward. There are cons with covered stents: if they collapse, it can be more abrupt. He did not do this last February when initially placing the stents because we wanted to see how Ella’s body would respond.

We came down to the cafeteria to have some coffee and breakfast. We’re both so tired – there has been little sleep the past couple of days. Please pray for the Bun and that the procedure will occur with no incident.

UPDATE, 8:53am (Tina): Ella is doing well. They have access in her vein and artery in her right groin area. We also requested that they place the IV in her foot. The foot is not the normal place for an IV during this procedure since they have to gain access via her thigh on one side which might cause issues. But they told me that they were able to get the IV on her right foot. We’re happy about that part. They have not done any diagnostic tests yet, but wanted us to know that Ella is hanging in and they do have access. Just like last time, it took about an hour to gain access so they can really start the procedure. Keep praying!

UPDATE, 9:55am (Tina): The cath lab nurse just called again to let us know that Ella is doing fine with the procedure. They have access into the SVC right now and confirmed that it is definitely narrow. They have one balloon in there now and may decide to use an even larger balloon to reopen the SVC. Also, they spoke with audiology and the plan is to complete her hearing test once she is in the recovery area. Although the audiology test may not happen since they are not close to being done in the cath lab. We’ll just have to see!

UPDATE, 10:41am (Tina): The cath lab called again. They were able to balloon the vein and just placed another non-covered stent in between the other two stents. So, now she has 3 stents! They are currently going back in with another, larger balloon to see if they can open it up a little bit more. Ella is doing fine with the procedure. They are hoping to be done soon. Thanks for all the thoughts and prayers.

UPDATE, 3:50pm (Tina): Sorry for the delay in updating. Ella is doing amazing. It is such a relief. Dr. Fagan came out from the procedure and said that Ella did great. He decided to place another mesh stent – the placement is inside an existing stent to reinforce and try and prevent the tissue from growing through again. It was a consideration to use a covered stent, however there are downsides to using them. Once in place, they are tough to balloon and expand. We know that this process of ballooning and expanding the stents is expected as she grows bigger; covered stents make this tougher to accomplish.

Dr. Fagan is keeping Ella on an aspirin regiment for many months and years to come. Now he has added a new medicine called Plavix, which along with aspirin, is used for the prevention of thrombosis after placement of intracoronary stent. He’s hoping this will help prevent the tissue from growing into the stents too.

We’ve checked into the ninth floor facing south while the rain continues to drizzle outside. The nurse on this floor has been great too. Although we had to track down and advocate for food and medicine since 12:30pm. Somehow the orders were not placed correctly downstairs in the heart cath lab, so there was a huge delay once we arrived upstairs.

The plan is to stay overnight for monitoring. They plan to give her antibiotics via IV from the procedure. We will dose her with Tylenol as needed. So far, she has been saturating great and does not seem to have any discomfort from the anesthesia. We’ve just given her the first round of food and expect that it may upset her tummy, as it did last time. All in all, she is doing amazing compared to last time. Also, we think it is because the stent was already in place, procedure was shorter and overall easier on her system.

Dr. Fagan did state that her irritability over the past several weeks is pretty common given the narrowing of the SVC. With Ella, the carotid artery on her right side is tied off (from ECMO), so she only has one viable artery to her brain. When the SVC narrows and pressure increases, it can lead to headaches and overall irritability.

They are planning to take an xray and echocardiogram in the morning. If things look good, we should be able to go home tomorrow. That is our hope.

UPDATE, 6:50pm (Tina): So far, there are no adverse reactions to the 4pm feed. I just fed her again, so we will see if it starts to catch up to her. Otherwise, she is doing pretty well. She just fell asleep for a little nap (her first one of the day). Her numbers don’t look that great while she’s sleeping which is a bit concerning. Her heart rate is 155 and saturating 90-91. Her respiratory rate is between 45-50 breaths per minute. We may have to increase her O2 for a bit to help her along.

I’m curious to see how she does a bit later with the dose of antibiotics. Those have been difficult for her to tolerate in the past. Then again, she did not have any adverse side effects from the earlier dose given in the cath lab. Also, the nurse in the cath lab flushed her IV at 12 noon with a hep-lock, to try and keep the IV viable. Unfortunately by 4pm, the IV had already gone bad! Very typical for Ella. So now, they decided to change the medicine and give her antibiotics via her g-tube tonight. Since it is a different antibiotic, we’ll have to see how she reacts. I’m hoping that it doesn’t make her feel sick. Although sleep will not be the best tonight (it never is in the hospital with all the interruptions), it will be better for everyone if Ella sleeps solid and the nurse can be stealth. Shift change is happening as I type this update, so I’m curious to see who we have overnight. We’ve had 2 great nurses today, but overnight is so key when everyone is trying to sleep. Please Lord, give us a good nurse.

I’m here with Ella tonight solo for a few hours. Yesterday was Josh’s birthday. We did not really have a chance to celebrate. He was busy completing some contract work and we knew we’d be here all day today. So, I found some great tickets to the Colorado Avalanche vs. LA Kings game tonight at the Pepsi Center, center ice. Daddy has escaped with a friend to enjoy his birthday and not think about hospitals. He emailed me this picture a few minutes ago from his phone commenting about the great seats. Good break for Daddy!

Thanks for all the support and prayers. Ella did great today with the procedure and is recovering quite nicely. We can already tell that this has made a difference for her. And every time we visit the hospital, we meet more people and get to share Ella’s journey. You know when you just met a nurse that gets teary-eyed just by listening to a brief summary of her story, that the Lord has special plans for this little one. Some days it is so hard to hold onto the truth and keep it forefront in your mind. I’m just thankful He sends these ordained moments for us. It’s nice to get those blatant reminders that He is still here and in control every step of the way.

Psalm 9:9-10 (NLT)
The Lord is a shelter for the oppressed,
a refuge in times of trouble.
Those who know your name trust in you,
for you, O Lord, do not abandon those who search for you.