Sarah's blog

Coming back to TCH from CHOP

Hello world! The plane is on it's way to come get me to bring me back to TCH CVICU. We can't wait to get there!!! The whole family will be back in the same city again ❤️

Update 8-12-16

Both Lymphadic doctors (Dr Dory and Dr Itchen) have come by and basically signed off on Sydney! They both believe the procedure was a success, and they have done everything they can. This is great news! She is still swollen and her stomach is still very large, they said that will take a few months for it to go down. We are still on the breathing machine, but this is for sure a step in the right direction. We are pretty sure Sydney will be sent back to TCH next week.

Update 8-10-16

I wanted to update everyone on Sydney's condition. The doctors are cautiously optimistic that the procedure worked. They do not believe she has the issues they thought before. They need to wait and test her stool 1 more time to be sure, but they believe the procedure worked, and her body is reabsorbing her fluid. Her stomach is still very large, and her face is still swollen, but her arms and legs are much better. Dr Dory said it will take months before she is probably not swollen at all, but overall he is happy with where she is. We do not have to be here while we wait for it to go down. They have started her on a low fat formula in her feeding tube. She is getting about 2 teaspoons over 2 hours, and she is handling it so that is great! Dr Dory said if she continues on this path they will talk about next week us going back to TCH ICU (setting a date, not going next week). What we do now is wait and see how she responds over this next week.


Sydney has unfortunently developed a complication from the surgery. They are really honestly not sure if she has an actual issue or if her Lymphadic fluid is just trying to find a new path and reabsorb in her body. This is what we want! There is a possibility she might have Peritonitis/ Neck or 3rd Spacing. Peritonitis is when your bowel gets an infection from a trama (surgery) where it is disturbed. The procedure they did had to do with her stomach, so this could be an option. They went ahead and started her on antibiotics in case this is an issue. Third Spacing is an issue where fluid is going all over your body and it can't or won't absorb it. It is all really complicated and I am not 100% sure on these explanations. Doctors said we basically have to wait 24-48 hours to see what she does. She is SUPER swollen and cannot be touched really bc it hurts her. For now we wait and see. The biopsy revealed no rejection on her heart and her labs have come back good.

First day after Lymphadic surgery 8/3/16

It is funny how a new day can bring such different news. Sydney did much better than expected over night and today. In true Sydney fashion she is fighting her way through this. Her drainage since last night is only 25!!! They took an X-ray and so far it does not show another leak in her system. The doctors said this is a really good sign and they are cautiously optimistic it might have worked! Her blood pressure is pretty high and we have not gotten back her biopsy results, but her gases (organ numbers thru blood) look much better today. All and all she is moving in the right direction! They said we still have to wait a few more days to be sure, and add feeds, but it looks promising!

Thank u to everyone for there kind words of support, prayer and encouragement. Our journey is not over, but I am happy we have taken a few steps forward again ❤️

Lymphadic procedure tomorrow!

They moved her up on the schedule and her procedure is tomorrow. It is a big day for her, she will get a cath lab (procedure measuring pressure in her heart), rewire her PIC line to a double lumen (add extra main IV to make it have 2), move breathing tube to her nose (thank goodness), and lastly the procedure. They will do a Lymphanigram (sp) where they inject dye in her Lymphadic system, then MRI her to see where all it goes. As long as they think they can then they will intervene and start fixing her! We need lots and lots of prayer for tomorrow bc this will take a toll on her, but something that has to be done. We hope and pray the MRI/dye shows a Lymphadic issue that can be fixed, so she can get ready to come home.


She is smiling!

Status 8-2-16

We are settled in CHOP at the Gift of Life House for transplant patients. The doctors are very nice here and the care is very similar to TCH. I miss the doctors and nurses at TCH very much and the comfort of there faces, but they are nice here. They are up to date on her chart and status, and are super open to discussions with me. The thing I miss the most is the Attending involvement that we had at TCH.

We made it!

We made it safe and sound to CHOP. We left about 9 am from Hobby and landed here around 1:30 pm (est). She is snuggled in her new room. They are keeping everything the same, so they can get to know her. Tomorrow or Tuesday we will start to meet the doctor team.

Sydney 3 months

Sydney Payne 9.2 lbs. She loves to look at her mobile and stare at people when they come to her crib. She is a miracle and our love

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