Okay, now that things have settled a bit…here are some more details and highlights of the day.
Ella had the best night of sleep ever before her surgery. She slept solid the entire night…it was the perfect rest and she looked great before surgery.
When we went downstairs in the waiting room before surgery, a friendly face in scrubs came to visit us. Her name is Michelle and she works down in the surgery department. She expressed how she knew about Ella through a mutual friend and that she had been praying for Ella for months; Ella had been listed on the prayer chain at her church. She also reassured us that the staff assigned to the OR was amazing; she made sure that certain people were assigned to her surgery. How amazing is that…the world is so small and God literally orchestrates every detail.
After feeling blessed by her, we met the anesthesiologists and surgeons. They answered our questions and explained the procedures. We were told it would take 3-4 hours for her procedure.
As Josh alluded to in the prior post, it was fine until it was time to hand her over. Josh asked if they could stop for 10 seconds so that we could pray over Ella. During the prayer and once it was finished, we started crying hard as they carried Ella off to the OR.
About 30 minutes into the procedure, Dr. Abman and Dr. Lysinger (her pulmonologists) came out to the waiting room to discuss the bronchoscopy. They were very pleased with what they saw in her airway. They looked at the vocal cords – look totally normal. They looked at her trachea and her airway muscles. Those looked good too; they were not floppy as they originally presumed. They saw a tiny bit of inflammation at the top of her esophagus which looked like it was due to the retching and reflux issues, but nothing to be concerned about at this time. The most amazing finding: she has no scar tissue in her trachea from being intubated. Most babies that are intubated for 5 months would have some scar tissue. Everything looked great. Initially, they received consent to do a bronchscopy lavage procedure, if they noted mucous or some other findings that might be of concern. (A bronchscopy lavage is where the bronchoscope is inserted into the bronchi, or large airways in the lungs. Once the tube is in the lung, a small amount of fluid is sprayed into the lung. The fluid is then removed and sent to the laboratory for analysis. Respiratory tissues can then be observed and biopsied). Since everything checked out, they didn’t have to move forward with that procedure.
There was a glimmer in Dr. Abman’s eyes as he talked about the next steps. He expressed that we need to figure out “why” Ella is having these fluid issues with her lungs. I love it because this is a brilliant doctor who loves these types of challenges, you can just tell. He stated that we might need to do some other tests to solve the diuretic mystery. But he does want to take advantage of the fact that Ella is sedated today and was going to see if cardiology could perform an echocardiogram at the end of surgery. This would double-check her pulmonary hypertension and might provide some more insight if they have the ability to look at one of the chambers in her heart closer.
Grandpa came over to the hospital while Ella was in surgery and kept us company. We had lunch together in the surgery waiting area and just caught up on life. He was there with us while Dr. Partrick came out at the end of surgery to give his recap.
Ella did great throughout the surgical procedure. He went in the same incision. He admitted that her anatomy was a bit different than most diaphragmatic hernia babies, so I think it was great that him and Dr. Kays consulted. Her spleen was up high covering most of the gortex diaphragm patch, so not a lot of her gortex patch was visible. But you could see where the patch was sutured up against her esophagus. They were able to pull the nissen down and re-wrap it. Since her diaphragm tissue did not look that viable and knowing her history, they reinforced the diaphragm area near the hiatus with Alloderm. We’re hopeful that this will buy us more time and that as she grows, her tissue can regenerate over it.
When he looked around at her anatomy, everything looked normal. For example, he mentioned that sometimes the stomach can be smaller in these babies yet hers was a reasonable size. He was happy that the g-tube was able to remain in the same place. Finally, she was on a bit higher flow of oxygen coming out of the surgery (3 liters), but was able to be extubated without issue.
Considering everything, it could not have turned out better. We praise God for bringing Ella through her surgery successfully and for giving us so many friends, family and other Bun fans that are so willing to pray and support us. We know that is why Ella did so well today.
Tonight, Ella is resting comfortably in her crib. Because she needs IV access and is such a tough stick, they opted to leave her old IV in her left hand and added one to her right hand during surgery. So now she has 2 access points. The plan is to leave them both in as long as they are viable.
During surgery, they also placed a caudal epidural in her lower back. This helps to deliver pain meds and keep the mid-part of her body (where the surgery took place) in a numb state. As long as she has the caudal epidural, they need to have IV access.
Ella is a bit frustrated having both of her hands bandaged up. She tries to itch her nose, which she does frequently with the high flow on the cannulas, and can’t do it effectively. This makes her frustrated. She is comfortable and not feeling any pain right now, but as soon as they begin to wean the pain meds, we are expecting a fussy Bun.
Also, she has a foley catheter that will remain in place as long as the caudal epidural is in place. I guess that the epidural pain meds can also “numb” the bladder so that it does not sense when it is full and empty properly. Therefore, this will remain in place for a couple of days. Hey, we get a break from changing diapers….it’s all good.
Although it is still a challenge to work her binky and her frog pillow (her NICU souvenir), somehow she is still managing. As she went to bed tonight, she clearly wanted to escape the day too. Now, we’re hoping to join her.
Thanks again for all the love and support. It means so much during these times. And the verse that stood out for us at the beginning of the journey resonates tonight too:
Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
