I had a chance to talk to Dr. Kays post-surgery last night.
He said that Ella did well through the procedure. First, they placed a central line. They tried through her right leg and it wasn’t working, so they switched to the left leg. From there, it was threaded sub-cutaneously up to her right side near her chest.
Normally, they place a central line through the neck area, but based on Ella’s history of having a collapsed superior vena cava and all the work she has had done in the chest region, they wanted to avoid that area. Also, since the surgical repair was on the left side, they threaded it over to her right side to remain out of the way.
Dr. Kays hopes to use the central line as much as they need to over the next several days. It has risk of infection just like any lines they place in Ella, so he does not want to see it in there any longer than 2 weeks.
The nissen surgery went well. Since Dr. Kays could not find a piece of paper, he began drawing a visual of the procedure on his scrubs! (Here is a great page that I found if you want to read more about the overall reflux issue, nissen procedure and g-tube). They took the upper section of her stomach and tied it around the lower part of her esophagus. This creates a drawstring-like effect. When Ella’s stomach becomes full, it will tighten and not allow for reflux. Also, he noted that she now has a “cute button” (he was referring to her g-tube).
If you remember from Ella’s repair surgery, her appendix was relocated to her left side beneath her tummy. Apparently, it is common to remove the appendix during a nissen procedure. It is not something that they look for or search for, but when it is apparent and seems like it might provide future complications, they remove it. So, just like her parents, Ella no longer has her appendix!
Dr. Kays was able to remove the gortex patch that lined Ella’s abdominal muscles (note: this is NOT her diaphragm gortex patch. Ella’s tummy was going to be too tight when he moved all her organs back into her belly during the repair surgery, so he had to line her abdominal muscles with an additional gortex patch when he closed. Since she is bigger, he was able to remove that extra patch). That was a positive. He did note that her liver had adhered to the patch slightly, but he was able to safely pull it away.
Ella will be off of food for 3 days (yep, no food for her first Thanksgiving). The first time they will try food through the g-tube will be Saturday. From there, they will give small amounts and build her back-up to full feeds through the g-tube.
He ordered for Ella to be given steroids 2x per day for the next 5 days. This should help her healing overall, but especially for her lungs to gain strength.
She was given a one-time dose of versed (sedation) yesterday for the surgical procedure as well as an increased amount of fentanyl (pain meds). The fentanyl was bumped slightly to help with her healing over the next several days. Once she has stabilized, they will begin to slowly wean it.
Since she was sedated last night, he bumped the ventilator to 40 breaths per minute at 50% oxygen.
The plan is to get another chest x-ray on Friday and see how her lungs have progressed. As soon as possible, he wants to extubate her and put her back on CPAP.
Dr. Kays did mention that we are not sure how CPAP and the nissen procedure will work together. Most babies have the nissen procedure when their lungs are in a better state and they do not require CPAP. So he warned that we are going into a bit of uncharted territory. The potential side effect is that since the CPAP is blowing continuous pressure into her lungs, that part of the air can also go into her tummy. Now with the nissen procedure complete, she will not be able to get rid of the air as easily. This might cause her additional discomfort.
Also with the nissen, he mentioned that Ella might do something called “retching”. If her belly gets too full, her body might try to spit up, but she will not be able to. Again, just another side effect of the procedure. As we discussed before though, the benefit is no heartburn/reflux symptoms for Ella as well as no aspirating into her lungs!
We are hopeful that this surgery not only solved her reflux issue, but will play a big part in helping her lungs to get stronger. Dr. Kays thinks that the reflux was contributing to the issues she has had with her lungs recently.
We pray that this is the last major surgery for Ella. She has been through so much already in her short life. Please pray that her body will heal well and that when they begin to feed her via the g-tube on Saturday, she will tolerate it. Also, please pray for good chest x-rays over the next few days. Already it has been nice to have her off CPAP because her nose is getting a much needed break. However, we want her to get strong enough to move to the next step.
Thanks for all the love and support for Ella and her roommates. On this day of Thanksgiving, we are thankful for these little ones. They are truly a gift from above.
Psalm 107
1 Give thanks to the LORD, for he is good;
his love endures forever.
Psalm 111
1 Praise the LORD.
I will extol the LORD with all my heart
in the council of the upright and in the assembly.
2 Great are the works of the LORD;
they are pondered by all who delight in them.
3 Glorious and majestic are his deeds,
and his righteousness endures forever.
4 He has caused his wonders to be remembered;
the LORD is gracious and compassionate.