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

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.

Ella has been really cranky the last few days. While Tina’s been nursing a badly sprained ankle, I’ve been on Ella watch during the night which has made me a bit of a cranky bear too. The last couple nights, Ella was up almost every hour after 2am. Most of the time, it’s just a request for her binky and frog. Sometimes it’s for a drink. Other times, it’s because she’s pulled her cannulas out.

I do think we have some rationale for her insomnia the last few months which really started after her last hospitalization. Through some online research, it’s our thought that one of her meds could be contributing to her restlessness. We’ve identified her increased coughing as a side effect of Captropil which may also be keeping her awake. This is not something we can modify at this time though due to the positive impact this med is having on her heart and the rest of her pulmonary system. Hopefully the procedure on the 25th will be successful and will reduce the needs for this kind of medication. We’ll just have to see though.

She did gain weight rapidly over the past 5 days, 9.06 kilos to 9.42 kilos. Plus, today has been 2 weeks since we gave her a dose of Bumex. So like clock-work, we gave her a dose of Bumex at noon to see if we could get some of the fluid off. We’ll have to watch her weight over the next few days.

With me having Presidents day off, I was able to escape with Tina for some one-on-one time for a good few hours this afternoon. We enjoyed lunch together and people watching at Wash Park. What a gorgeous day.

Thank God for our baby girl, even though she’s been quite a cranky butt.

And boy her arms are tired.

Tina made it home safe and sound. Ella and I picked her up from the airport around 7:30 tonight. Great to have her back.

Ella only woke up one time last night, although she was really fussy and inconsolable this morning. We decided to let her take it easy. She took a solid few hour nap in the afternoon, and upon waking up, looked to be feeling better.

We received a call from the pediatrician with her BMP details. All looks good. Her K (potassium) is at 4.9 which is right between the desired 4 & 6 mark. Her BUN is 21. Both these numbers are encouraging because it tells us that the weight adjusted aldactizide (diuretic) is helping her maintain her fluid balance, and the potassium is the right dose to keep her number in check. With this new info, we’re hopeful that we can maintain her at a good place without using any stronger loop diuretic (Bumex).

Kelly is enjoying some time with a friend tonight and we’re all looking forward to a relaxing weekend.

The Bun was a bit more fussy today. This leaves little hope for a solid nights rest.

We took a trip to have some blood drawn for a BMP. We thought about going yesterday, but the phlebotomist who usually does her draw was off. So we opted to wait ’till today considering how consistent and good he’s been with Ella. Once again, he was able to get the blood he needed on the first try.

Ella was such a trooper. She knows what’s coming as soon as the rubber tourniquet gets wrapped around her arm. She fusses quite a bit, but recovered fairly quick. She calmed right down for the drive home too.

Ella also had a pretty good PT session. So good to have some consistent progress in this area.

Please pray for solid sleep tonight for all of us, and also for Tina’s travels tomorrow. Can’t wait to have her back home.

TGIF Ella Fans!