Today has been crazy busy. Our dialysis lines got clotted a few times, so she was off for quite a few hours and we lost some ground with her fluid retention. She is still a human marshmallow. They have it working now and we are crossing our fingers we don't continue to have problems. It is such a key component in getting her better.
Faith's lungs have also filled with fluid and we had to switch to a different kind of vent called an oscillator. It expands the lungs better and will work more effectively for her. However, she was fighting the machine so they had to give her a drug that acts as a paralysis to put her on it. At first that freaked me out, but the Dr. said it was a good thing because it will make her completely relax which would help out her organs in their recovery. That does make sense.
We also had a CT today. I got the feeling we went in because they were wondering if they should work so hard to keep Faith going. I was an emotional wreck and , wow, what a process to get her down to the CT with all her machines she is hooked up to! Eight people, including two doctors, went with her on this journey and it was quite the task. However, it was worth the effort! The CT scan showed that she does NOT have any significant brain damage. Hooray!!!!! There is a small bleed at the base of the skull, but not anything that needs to be drained. So, I think this has made the medical team here feel better about continuing her care and it sure made Monty and I feel like we have hope again!!! The neurologist feels like the lack of dialation of the pupils is due to the swelling and the pressure it is putting on the brain stem which controls our vitals. So, again, we are back to this swelling issue and how critical it is to bring it down.
A funny thing that happened today is that Faith lost a tooth! She lost one of her front teeth, which actually makes a perfect little gap for her vent tubing. I am sure it was knocked out by the vent and suctioning, but no harm was done so no big deal. Now, I just get to carry a little piece of her in my purse. :)
Tomorrow the other kids are coming down to see her and the Ronald McDonald house is putting on a Easter Egg hunt. So, we will take a little time away to spend with them over there. They should enjoy it and we will enjoy seeing them.
Take care and I'll fill you in tomorrow.
I am SOOOOO glad to hear the results of the CT, and to know that at least things seemed somewhat "stable" today. Hopefully tomorrow will actually show progress. Once again, I feel your pain, and I think it's even more of a connection since we are UCD patients, too. We have occupied PICU bed 5,6,7,and 8 in Casey's 4 years!
ReplyDeleteOn a different note...I was a patient at UCD in September, havinga brain tumor removed. Dr. James Boggan in neurosurgery is the man! So ask for him if you have any concerns.
I teach, and have Spring Break this week. If you are up to it, I might try to come and visit you...bring you some sunshine?!?!?!
We also have a connection being UCD patients and we empathize with the roller coster recovery ride. Peter prays for Faith every night and is looking to have a play date with her.
ReplyDeleteStay Strong and with admiration,
Renee and Peter Johns
Boy, what a post to wake up to! YAY for the CT results! Shelly, this is all too familiar and really hits home.
ReplyDeleteI am here for you.
Valerie
Erica
ReplyDeleteThis is a great news to wake up to. EVERYONE PLEASE kEEP UP THE PRAYERS THEY ARE HELPING:)
Faith and all of her family are in my thoughts every minute. Shelly & Monte Thank You again for keeping us ALL up dated.
Love, Faith's Teacher Erica
Praise God! Shelly, I am so happy to hear the results of the CT. I know Faith still has a long road ahead of her, but what wonderful news. We are still praying! I have been thinking about Faith since we left Sacramento and am anxious to be home and able to visit again soon.
ReplyDeleteShelly, thanks for the update. We will continue to keep her in our prayers. Stay encouraged....there are so many people that are praying for you and your family. God bless!
ReplyDeleteDesiree Burrier
GO FAITH!!!! That little one is really amazing! I'm so happy that the kids will get to spend some time with you guys today. I know you will enjoy your time with them, you definitely needed this! Hang in there! I will be looking forward to your next post!
ReplyDeleteLove you all!