Posted (jooosh) in All Posts on August-27-2007

Tina and I arrived at the hospital this afternoon around 3:30pm and to our surprise, Ella was already back in the NICU, procedure complete. I was anxious to hear any details about what had occurred. When I approached the nurse on staff, she indicated she was not able to give me any information. However, I knew she was there during the entire procedure. So, I was looking for something; anything to let me know how Ella did.
The nurse stated, again, firmly that she was unable to give me any information. Couldn’t she at least tell me something? I was looking for her to diffuse my anxiety and instead I got a by the book attitude of “I can’t say anything”. With that response I got very frustrated very quickly and, in a nutshell, I ended up apologizing to her later. So, needless to say, this afternoon was not a “shiny happy people” moment for me at first, but things did get better.
Once we were able to get information, initially from Dr. Saxonhouse and then from Dr. Kays, we learned that Ella’s contrast x-ray did show that her superior vena cava had collapsed. There was no clot, but it was like Dr. Kays had thought: Due to the irritation by the cannula, the vein had become inflamed and weakened. This is not something they normally see. He’s only treated two other cases, out of about 200, where this had occurred. This is also confirms the cause for the swelling in her head.
To help open the vein back up, they were able to insert a small balloon and expand it a little. They had to be very careful while doing this, due to the risk of irreversible damage to her vein. Thankfully, the procedure was performed without issue and for now it looks like it has done the trick. Also, Ella is receiving heparin to thin her blood and help with the flow. We were told that they may have to repeat this procedure again because there is a chance of a reoccurring collapse. If they do go in again, they’ll be able to utilize some scar tissue that would have built up around the vein and stretch it out a little more.
Yes, there was a little drama with her oxygen on the initial transport, but her stats never reached a critical point during that time and she recovered very quickly. Either way, not a fun thing for Tina and Grandma to see. The speed in Ella’s recovery time after this incident was a good sign as well. She was also very stable throughout the entire procedure. Her stats didn’t drop at all and she tolerated all the work doctors performed on her. Thank God.
A bit of unexpected good news: Dr. Kays is going to give Ella some of Tina’s milk tomorrow! He wants to get her intestines working, so they’ll be feeding her via a stomach tube. This is really exciting for us because it’s the first time that all of Tina’s work will pay off.
At this moment Ella’s stats look good and she’s resting well. Thanks to all of you for the prayers. I know they’ve made an incredible difference in our baby girl’s health.
Continuing to praise God for the gift of being Ella’s parents. Thank you Lord…thank you.

Posted (jooosh) in All Posts on August-27-2007

(Nathan Greene – Chief of the Medical Staff)

The above image was mentioned by Laura Blackwell and thought we would share (Thanks Laura). This is exactly how I pictured things when our baby girl had her major surgery a week ago today.

Ella had a good night and is scheduled for her x-ray and possible procedure at 12:00pm (EST) today. Please pray.

If you missed it, you’ll want to check out the video from last night’s post. She too picken’ cute!

UPDATE (1:30pm EST):
It’s Tina, writing in with an update. Grandma and I went to the hospital this morning to see Ella before her procedure. Her stats were good, she was stable and calm. She seemed very peaceful as she fell in and out of sleep while gripping Grandma’s finger.

Then around 12 noon, they began the preparations to move her down to radiology. That took about 30 minutes. She is connected to sooo many machines and tubes. There were about 7 staff members involved in her transport.

Before they moved her, they gave her a paralytic medicine so she would not move and be lucent. Then, they switched her to a transportable ventilator machine (one that she does not normally respond well to).

As they started to transport her from the NICU and went through the main doors, something went wrong with the ventilator and she was not getting any oxygen. The machine began to beep loudly and they began to bag Ella. Then, they turned around and came back in the NICU to fix the ventilator and stabilize her again. This was tough to watch! I have no idea how long she was without oxygen. It took them about 10-15 minutes to stabilize her again and fix the ventilator.

From there, we went down to the room where the procedure would be completed. When we walked in, it felt like a freezer. Immediately, Dr. Kays told them that the room was way too cold for a baby and they needed to get it as warm as possible.

Once the bed was next to the operating table, they began to unhook everything from her bed. All the drip lines, IV fluids, catheter, fluid bags from the chest tubes, etc, etc, etc. Then, about 4 of them lifted her simultaneously onto the operating table. The prep part of making sure she is stable and all the machines are hooked up again in the radiology room was about a 45 minute procedure.

We followed her down to radiology because they had consent forms for me to sign. Then the doctor (radiologist) came over to talk to me and explain the procedure. Although he was trying his best to be comforting, he was honest and frank: they have only done this type of procedure a few times. It is not common. Then, he went through the laundry list of side effects and risks of going through the superior vena cava vein. He spoke about all the negative things that can happen to Ella.

The art work from this morning helped me to visualize. There were about 10 medical staff in this room with Ella, prepping and stabilizing her. But ultimately, He is with her.

I’ll be honest – – it was a roller coaster morning. We had such a good time interacting with her this morning. Then to see the paralytic medicine take effect (she almost doesn’t look alive), to the drama of moving her and having the ventilator go out, to the radiologist giving me the laundry list of everything that can possibly go wrong with my baby girl and sharing that this is not a common procedure that they have a lot of experience with…man!

As a heads up, it will likely be 4 hours or so before we have any updated information. Thanks everyone for your prayers.

Lord, I know you are in control. Give me Your strength today. Everything that happens is something that you ordain. All of it is for Your glory and Your purposes. Please protect and hold our baby girl in your arms. Thank you for the blessing of Ella Renae.