post-op day 1

7:30 Sophia was awake and waiting for us when we arrived at the hospital. She had a fever of 102.5 overnight that they managed to bring down but they just took her temp again and it is back up. They decided to wait on her feedings until they talked to us some more to clarify her schedule. The good news is they decided she was doing well enough to pull her catheter and nasal cannula, which means she is breathing all on her own. We are just waiting for them to finish taking readings then we will be able to hold her!

11:30AM: This is Deb–I did get to hold little Miss Sophia, but between her fever and her frustration with me for not standing up and walking around with her, she wasn’t very happy about it. We finally got a doctor to write for some Ibuprofen and found a syringe that worked in her G-tube. It didn’t really have a magical effect by any means, but after another small dose of sedative, she is at least sleeping in and out (or was before I started this entry). She’s happier when she has a cold paper towel on her head, a cold toothette in her mouth, and some music playing. The nurse practitioner that was in surgery said Day #2 is normally a tough one as she starts adjusting to everything and weaning off the pain meds. Sophia will get to start gradual continuous feeds any time now. Hopefully, she’ll feel better with something in her tummy. During rounds, they prescribed a medication for her hypertension (high blood pressure), which will also allow her to get off her IV med that keeps her vessels open (making it easier on her heart). She can’t move to the general pediatric floor until she is done with her IVs, so that is one step closer to going home! The blood pressure med should be relatively temporary, although the doc said the medicine would help her into her recovery too. Later on tonight, they’ll take out her arterial line (that they are using to monitor her blood pressures). Luckily, they can keep the other line in to do blood draws. Her blood tests have been pretty good (her CO2/O2 has been great, and this was a long standing issue for her the first time). Her potassium is low and is being supplemented, but now that they are restarting one of her diuretics, this should resolve itself. Sophia’s wearing some Halloween socks today since that is the only clothing she can really put on with all of her tubes. Off to my bedside shift…

6:30 Sophia has been quite uncomfortable throughout the day with her temperature fluctuating between 100.4 and 105.8. The doctors keep reassuring us that this is to be expected, but they still seem concerned and keep coming in to consult with one another and ordering various meds. The nurse even put this “blanket” on her that was hooked up to what looked like a big vacuum that pumped cool air in all around her to try to bring her temp down and put cold packs all around under her bedding. She rests for short spells after each dose of pain medication, but hasn’t really slept all day. She did seem to have a brief reprieve when she got her sponge bath. I think she really liked the cool water. During the bath we got our first glimpse of her chest, and it was quite disturbing to realize it was over half the length of her chest. I have posted pictures but keep in mind that they are graphic. The site will remain uncovered from now on, and we are just supposed to keep it clean. This time they stitched her up, so it isn’t open like the last incision and, thankfully, I won’t have to pack gauze into the wound. We looked at x-rays and could see the 5 wire loops holding her breast bone together (the doctor said they are her little bows). She finally started getting some food around 6PM. She is only getting 5 mls/hour (1/6 ounce) but its a start. The nurse was able to remove her arterial line, so she has one less tube attached to her. There isn’t much drainage coming out of her chest tube any more, so hopefully that can come out soon. Her chest x-ray this morning was unchanged, and so was the EKG they did mid-afternoon. We haven’t heard anything about the blood cultures they took this afternoon, so nothing major must be growing (another good sign).


  1. Margie Paller (Occupational Therapist from MPS) says:

    I am so glad that the surgery went well and recovery is progressing. Your updates are so compassionate and sensitive! You go, Sophia! Hope to see you soon!


  2. YEAH!!! What a relief to have the surgery and that first night over. Sophia rocks!!

  3. Good morning sweetheart, it’s your chatty Auntie Erin. In fact, she was refreshing the computer sooo much yesterday on her “day off” at home painting that there now is a small section of white paint on the space key. Boo. You’ll have to come and see it soon! Hope you have a very good morning and keep on updating your fans. Kisses!

  4. You may be holding Sophia as I write this! I am excited for you that things have gone well so far. Give little Sophia my love and best wishes that the pain will be slight and the recovery quick.

  5. I am so glad surgery went well and that she’s well on her way to recovery. What a hard thing it must be to see her and be so close and not be able to snuggle close and just run home with her. Thanks for the updates- it’s great for those of us far away to feel a bit closer- big hugs for all three of you from me!

  6. Hooray! Sophia, you are such a superstar trooper. we’re all very proud of you and your mama and papa. We’re so happy everything has gone so well. Soon you’ll get more snuzzle time with everyone, including mukwa, i’m sure.

    love, christy, joe, and simon

  7. Sandy Danks says:

    Just checking in to see how the little trooper is doing. I’ll have to come back in a little while. Guess I’m going to have to change my wallpaper after today, but seeing Sophia in her pumpkin pj’s surrounded by the pumpkins always makes me smile!

  8. Cousin Kelly says:

    I am glad to hear that Sophia’s surgery was uneventful! I hope she breaks that fever though, soon! We all know she is such a strong little girl! Our thoughts and prayers are with her!