Saturday, September 26, 2015

It's Done! Open Heart Surgery


It's done...it's DONE! Savannah had her open heart surgery and we are actually home now! Praise the Lord! (Actually I'm finally finishing this 7 months later. Woah! Were did the time go?!?) (Ha! I'm adding the finishing touches and Lord willing submitting it a year after her surgery! ;) )

It was a roller coaster ride. It kind of reminded me of Josiah's 4 months in the NICU. One moment things look good, then not... back and forth you go. It was also a roller coaster of emotions. Part of me was glad we where finally having the surgery, she will get well and thrive (Lord willing). Then the other part of me didn't want her (or us) to go through it.

Waiting before surgery.
     But there we were, facing the fact that we where waiting for them to take her to the OR  for surgery. We were tired, hungry and putting the life of our daughter in the hands of a surgeon we had just met. Though whether we think about it or not, our children's lives are always in God's hands and He can call them home whenever He wants!
     While we where waiting, someone on the medical team mentioned they were all excited for her surgery...that her case was highly anticipated. Though at first we were confused we eventually found out that the cardiologist surgeon was highly sough after and a bunch of hospitals were "fighting" for him and Tufts won! lol! She was his first case at Tufts and everyone was excited to work with him. Him was awesome by the way! He went above and beyond his normal duties to care for her, Coming in daily to see her, calling when he wasn't there, and even called our pediatrician after coming home to check on her!! :)
Right after surgery.
"Surgery went great! Praise the Lord! They are finishing stitching her up now and will bring her up to the ICU to get settled. They will keep her sedated for the evening. Thank you for your prayers! I will update when I know more. Thank you Pastor Jeff Haavisto for sitting with us."

Later in the day after surgery.
"The web here refuses to let me in to blogger. Soooo I will have to wait and to share details and pictures. I just wanted to say she made it through the first night just fine. Her blood pressure did go up at one point. but they got it down. They had to hook her up to the pacemaker at one point, what is was off of it this morning, smile emoticon They took the breathing tube out and attached her to a CPAP, so her lungs are partially working on their own. She was just groggily and awake and was miserable. I'm glad she is back asleep. Thank you for all her prayers and kind words!"
Still sedated that morning after.

"Selfie" the morning after surgery.


"Today has been rough so far. She's been awake often. Ya! But was uncomfortable and crying a lot earlier. Though she was just awake and staring, not all that responsive. Not sure which is worse for me. They wanted to take the chest tubes out (they let the fluid from swelling drain out), but that is not going to happen now. They were able to take the catheter out though. Please be praying, I spoke up this morning that she looked swollen and her breathing was really retracting again. They agreed and upped her meds to help her body drain the fluid out, which will help the breathing. it's working she looks better and her breathing doesn't sound so "wet." BUT the air bubble that's next to her lung has gotten bigger, not smaller. We are waiting for the surgeon to get out of the OR and with his permission they will sedate her and insert a tube into the side of her chest, so Lord willing the air will escape. We had to do that for Josiah so his lungs wouldn't collapse, while in the NICU. This is bringing back emotions from Josiah."
Thursday after her breathing tube came out.
Daddy's holding my foot. :)

Savannah hates her legs and feet covered, including when she sleeps, she'll kick the blanket off. The nurses learned that pretty quickly!! Even while sedated she would fuss and squirm a little and they discovered it was because they kept trying to cover them. To this day that make she chuckle...she is already SO opinionated! :)The picture of daddy holding her foot is special :) It was her way of comfort and tjrough the drugs her was her way of acknowledging that she knew daddy (or mommy) was there! When she heard your voice her little foot came up and she would relax a bit when you would hold it. It was incredibly hard not being able to hold her and comfort her through the pain!

Miserable, swollen, and not doing well today.


"wow, it's taking forever to deal with the tube! It's been over an hour and they are still working on her, not sure what's going on..."

A new tube was added today, to remove air and fluid, so my lungs wont collapse.

SOOO, Joseph came to visit and shortly after he arrived they announced that they indeed needed to put in an extra tube into her lung to help drain trapped air out (okay again memories of Josiah and his lung issues come flooding back). We where not allowed in her room nor the PICU at all while they did the procedure. We where told it wouldn't take very long (half hour I believe), so go grab a bite and they would come get us. WELL....it took over an hour. We thought perhaps they had come for us and we had been in our room eating (you can't stay with your child in the PICU), so we went into the PICU to find out. Well her room was still full of people and we were told they weren't done yet and as soon as we stepped out an alarm starting going off, with lights flashing, and the intercom announcing a code red in the wing that the PICU is in. I'm all of a sudden super nervous and starting to freak that it's Savannah and her heart is failing or something. It turns out she was completely fine, they had an issue and it took longer then expected and a code red is fire...code blue is heart (duh! Hah! I do know that, but in the moment we completely forgot). There happen to be smoke somewhere on the floor and they had to shut it down for a short bit. :)

Look at the bow the nurses put in my hair. :)


"I didn't sleep well after yesterday. She looks a lot better. The swelling has gone down. They just took the pace maker wires out (they go in through the skin and lay on the heart) and spent the morning discusses the game plan and readjusting her. She is finally sleeping and all is quite. Last night's x-ray looked good, but they have done 2 more. Her breathing is still "tugging" (picture below the ribs, her upper stomach caves in when she breath.) it shows there is still some air pockets and fluid. It keeps changing. The nurse says her stats (CPAP) look good again, yet just told me her x-ray didn't look great so they are looking at. To sum it up, heart is doing great! Respitory not so much! They started feeds through the tube and are waiting to make sure there is no "milking" (a nick in the gland?). I believe if all is well, they are going to take 3 of the 4 tubes out of her so she will be more comfortable. Sorry if this is confusing. Info literally keeps changing even as I type. Overall heart-doing great. Breathing-not so much. Thank you for your kind words and prayer! When your here you forget there is a world outside.

Friday, awake and doing better.

"Yesterday was another long day. Yet it was better. There was just a lot of adjusting and changes so she was uncomfortable and cried or looked stoned. They took the 3 chest tubes out. It was crazy to watch. They are good size tubes that go into her and are really far up into her body!! She is awake when they took them out and stitched up the holes. All the changes though where steps towards healing and getting closer to going home. She wound up having more chest x-rays then I could keep count. At one point the x-rays looked worse and that was a huge concern. So they redid them, and it looked fine (it was blankets originally causing the issue). Praise the Lord!! She was still really tugging when she breathed, but we where/are hoping it was just "splinting" (not taking deep breaths due to pain). She spent a good part of the evening crying in pain, so they had to give her a double dose of meds. But she did great through the night! They took the last tube out this morning and took her off the high-flow and put her on low oxygen (a very good sign)."

Tube's out...drugged up once more.
"I got to hold her!!! and am going to attempt to nurse her today! smile emoticon We had WAY to much fun at rounds today talking about her. smile emoticon Because she's doing well and we could be silly and light hearted. smile emoticon Lord willing we are coming home tomorrow! smile emoticonsmile emoticon We had WAY to much fun at rounds today talking about her. smile emoticon Because she's doing well and we could be silly and light hearted. smile emoticon Lord willing we are coming home tomorrow! smile emoticon"


Daddy took a picture of me holding her for the first time. Cried my way through it, so did she. So much pain!

Overall Savannah's surgery took place September 23, 2014 and we got to go home Sunday afternoon, September, 28th 2014. Praise be to our God for her safe surgery and recovery, for her life and health! Thank you to Pastor Paul and Peggy for coming to see us before we went home. That meant the world to us! Thank you to our church family that continually prayed for us and brought us meals! Thank you for everyone's love, prayers, and support as I updated you on FB. Last but not least, thank you to everyone at Tufts...our surgeon, cardiologist, respiratory specialists, anesthetists, nurses, doctors, cafeteria staff, all the employees that clean the hospital, and everyone else that I missed. You all made Savannah and I stay as comfortable, safe, and enjoyable as possible!

Holding her again, she's feeling much better!

We get to go home today! Praise God!
For His Glory,




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