Just a quick post because I'm super tired:
- The x-rays/echos show that the effusions (fluid under his lungs) are not getting smaller, despite the massive doses of diuretics. In fact, they seem to be slightly larger, according to the cardiologist.
- Riley should be having a cardiac MRI on Wednesday if scheduling can sort it out. The MRI will check blood flow and look for obstructions within his Fontan circulation.
- If the effusions are not decreasing by Wednesday, they will be putting in chest tubes to drain the fluid. Since he will be sedated for the MRI, it makes sense to also do the chest tubes at that time, if needed to avoid a second deep sedation.
- As a result of the congestion and the fluid build-up, Riley's oxygen saturation has dropped. It was 92 when he first got to the ER on Saturday. When we left the hospital tonight it was in the low 80s while an oxygen mask blowing oxygen towards his face.
- Digoxin has been added to his list of medications. This was one of the medications that was discontinued following his cardiology appointment in January.
- Depending on the findings during the MRI, a heart catheterization may be scheduled soon after.
- Riley has been fighting off a temperature for the past couple of days. It spiked at 102 degrees this afternoon and continued early into the evening. Ken called while we were driving home to tell us it had dropped down to 100 degrees. A blood test to check his white blood cell count had been ordered.
- Riley was very sad today. He barely talked, but he did eat a couple of strawberries (thanks Jennifer!!), a couple of bites of applesauce and one animal cracker. This is a big improvement over the past two days, when he ate nothing.
- Grampy is here!!! This will be a big help as we try to juggle Carter's needs with Riley's needs. And when Grampy walked into Riley's room, a HUGE smile came over his face, his arms rose up into the air and was thrilled--for at least a minute or so.
- Finally, thank you to Christa for watching Carter today so that Ken could get some rest, and for helping to organize some meal schedule for us! Thank you to Jennifer for a surprise visit, a lunch run, and a Sudoku book! And thank you to Lisa for picking Grampy up from the airport, the Bob the Builder DVDs, and for a wonderful dinner!
We are so grateful to all of our friends and family and are humbled by your continued love and support. There is no way we would survive these hospitalizations without you.
11 comments:
Hey guys,
up late here working the 7p-7a shift in our PICU.
Thinking of you all.
If they have to put the chest tube in, at least it can be while he's sedated for the MRI. Sounds like a good plan.
I wonder what the source of his fever is? Hopefully no infection/pneumonia.
Get some rest.
-Dave
Hi All,
Thanks for the update. Glad Grampy is there to help out with Carter. Very hard to be so far and feeling so helpless. Every moment we are thinking/praying for all of you there. Hug Riley for me. Love Grammy and Wayne
I could barely read about Riley over the phone to my mom,without crying.Poor little Riley has been through so much...your in our prayers and thoughts.
sending love and hope
xoxo
-cousin marisa
Sorry it wasn't a good news day. Have they given any explanation about why the effusions could increase along with drawing off fluid with the diuretics? Is this diagnostic in some way?
It sounds as if you have a wonderful support network.
Shannon
Hi Ken & Suzanne,
You are all in our thoughts constantly, especially Riley. I know how desperate you must fell right now. I am planning on dropping off some dinner for you guys tomorrow, either early or late afternoon. I will also return Riley's videos and books that he so generously shared with Cassidy during her most recent long hospital stay. Please let me know if you need ANYTHING! We will be hoping for some positive news after Wednesday's MRI and NO chest tubes (Cassidy called them her snakes). Anyway, I wish I could say something to ease your worry.....but I know that's not possible. So, instead I'll bring you some super yummy homemade vegetarian food tomorrow. Hang in there and take care of yourselves.
love,
Gwynne
It breaks my heart that Riley was so sad and not eating. Thank goodness his Grampy came to bring you all some happiness.
I can't think of anything else to say except this sucks. I will keep checking on Riley's progress and keep praying for him to get better fast.
We'll pray that the effusions will decrease by Wednesday. Hopefully eating (even a little bit) will help. Tell Riley that when he's all better, he'll have to come visit the other Riley and we can go to the Train Museum in Old Sacramento!
It breaks my heart to hear that Riley gets sad...that poor little guy has been through so much, and you guys are so incredibly strong.
Hugehugs!!
We're thinking of you. Yay for grampy. If you need another Carter sitter just let me know we can have him for any length of time at any time. The meal delivery schedule is now in place - we're all desperately hoping that you won't be living on our delivered food for too long and that R turns the corner soon.
All our love
the Lawrences
Hi again from Baltimore. You are constantly in our thoughts and prayers. I was glad to receive a phone call from Grampy late last night and to know that he is with you. He is there for those of us who wish we could be. Love and hugs to all. We pray for Riley to feel better emotionally and physically. Love, Auntie and Stephen
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