Throwing Wrenches

Hi everyone,

Thank you for all of the love and support you have shown to our family. I cannot express how thankful I am for all of the prayers. It is amazing how we really do feel the prayers wash over us. I love how God allows us to come to Him directly and how He comforts us in times of need.

Ella is more restful today and seems to be more comfortable. The rounds today (there were multiple, but usually there's only one in the morning 😊) with the doctors, nurses, and surgery staff went pretty well. During the daily rounds the doctors, nurses, pharmacists, and surgeon team members talk about what they need to change, add, or remove with medications, ventilator settings, nutrition, fluid balance, and much more. They also talk about goals they have for the day. The nurses communicate things that happen from the previous shift (day or night). This is a time where we (family members) are able to ask questions and learn more about her care. I really like being there for the morning rounds. I find I know a lot more when I go to them and I am able to even help sometimes because I'm the most consistent person around Ella. I have gotten a lot more confident in asking questions and suggesting things too which has been really cool!

Ella likes to throw wrenches in our plans so we often say we are going to do something, but she then makes us change those plans. She is still on a lot of medications that are helping with her nutrition, fluid balance, blood pressure, pain management, etc. Today during rounds I was told that the PICU doctor wants to be more aggressive in weaning Ella off the ventilator. This could mean that she would be getting the trach put back in or she may get extubated without it, depending on how she does. Dr. Watanabe came in after his surgery today and he and the PICU doctor aren't totally seeing eye to eye on the extuabation timing. They both have good ideas so please pray for clarity and wisdom for Ella's care team. I love how passionate they are about their jobs. It just shows me how much they love my little girl. It is so incredible how hard these people fight for her best interest. I know I've said this a lot, but I really can't believe all that the staff does and sees here in the PICU. They are truly special people.

Last night Ella threw everyone for a loop and during one of her breathing treatments, called IPV, her "stoma", or trach hole (as I like to call it), opened up and air and junk started shooting out. An IPV treatment is when a respiratory therapist holds a little machine that shoots air into the lungs that causes a wiggle that breaks up secretions. Ella often hates it but sometimes sleeps through it. I can laugh about this because it just makes sense that Ella would pull that kind of stunt. HA! I owe these nurses and therapists more cookies and candy. 😂

They have been upping Ella's milk consumption to 4 mLs an hour. If you look at that amount in a measuring device, it is so stinkin little, but I am just excited she's been tolerating it so far. I was told before her surgeries that there is a really high probability of Ella getting the chlothorax again and may need to go on the low-fat formula again...bleh. 😞 I am praying that Ella throws us a good wrench this time!

Ella got hooked up to this new attachment to the ventilator today. It measures the breaths that Ella takes on her own a little more accurately and can deliver better breaths. This is what the company says about it... "With NAVA, the electrical activity of the diaphragm (Edi) is captured, fed to the ventilator and used to assist the patient's breathing. As the ventilator and the diaphragm work with the same signal, mechanical coupling between the diaphragm and the ventilator is practically instantaneous." It seems pretty awesome! I hope it helps her wean off a little easier. It seems to help her be more comfortable.

Ella still looks really sick today. Ashley came in this afternoon and was kind of shocked at how poor she looked. She instantly ordered blood to be given (which I actually brought up yesterday! I was so proud of myself that I knew she may need it soon!) and Ella has been receiving it this evening. She already looks a lot better, but that could also be due to the cute bow we put on her 😉. I'm seriously amazed at the impact blood has on her little body. It's tricky with a heart baby to figure out the fluid balance when giving it, but it has shown to be so beneficial to her. I want to put in a plug for The Norah Foundation's blood drive. I think it may be over already, but you can always go to any BloodSource blood bank (anywhere!) and donate under Norah's group number 0990. I am pretty much done with pumping now so I can finally go and donate!

Since we've known about Ella's condition, we have prayed that we would see our suffering as a gift. I don't know if I've talked about this in the blog before, but doesn't that sound like such an oxymoron?? But we have prayed for that continually because the fruit from the suffering can be blessings. I was reading a devotional about suffering and I found this to really bless me: "Because the Lord is with you, and because the Lord loves you, everything that happens to you is filled with divine purpose. Every trial you endure has passed through God’s loving hands. And one day, when your faith becomes sight, you will thank him for every difficulty." I hope that one day we will see why God has Ella on this difficult path, but for now we just trust him.

Love,
Jillian