its early monday morning. I was discharged from the hospital yesterday morning and mom and i made it up here about 5 PM last night. it is so wonderful to be back together with Luke and Dillan. My son is really so very precious and I never want to be seperated from him again. It is only by the grace of God that I was able to manage it so well the first time.
As I mentioned before, Luke has done an amazing job learning how to care for Dillan, especially under these circumstances. BUt he has also learned how to navigate the ends and outs of this medical center and has been a great teacher to me as I adjust to our temporary home.
Dillan is doing well. He really is so very beautiful and we enjoy losing hours watching him sleep, eat and take in his new world. I am able to breast feed him about every 3 hours. We are blessed that my milk supply came in early and plentiful but also that I produce enough to satisfy him at every feeding.
Luke and I have a room just down the hall from Dillan and are able to be by his side within 1 minute. The nurses call if he wakes up hungry before we get to him on our own.
yesterday a neurologist spent some time with Dillan and also receiving his EEG strips. At this point, it appears that Dillan was not having seizures and that his episodes were not caused by anything neurlogical. That leads us to conclude that his episodes were being caused by an infection or by somethign that will never been explained.
At this point, they cannot confirm an infection. Some of his cultures will come back today and more this week. BUt the msot important one, a test of his spinal fluids, may not happen at all. Three times they've attempted a Lumbar Puncture (LP), but have been unable to draw any fluid. They are debating whether to try a fourth time, but I don't want them to. They are already treating him as if the test had come back positive and really results will just confirm the diagnosis, not change his care.
At this point it looks like Dillan will be here through Thursday so they can finish his cycle of medicine and continue to monitor him. We look forward to going home but ae thankful for the wonderful care he is receiving.
Praise reports:
Room near Dillan
His coninuted ability to thrive and grow and eat
Rest for luke and I by virtue of this room
Free parking for our car
How close my sister lives to the hospital and her willingness to host our mom for round the clock support!
Prayer Request:
Deliverance from all of this and getting to take DIllan home soon
Being able to keep this room in the hospital the whole time
Wisdom on performing a 4th LP
Strength and guidance and wisdom for all of us
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4 comments:
I love you guys! Thanks for the update, and I will continue to pray for you and your return home. Get some rest.
We are still praying for you, and I have a whole huge group of friends praying, too! You two are so strong and it's wonderful that Dillan is able to get such exceptional care with you two right there with him. Keeping you all in our prayers.
~Lydia and Colin
I have also enlisted my friends and family to pray for the health and welfare of precious Dillan! I am so grateful for all of the progress the little Spence family has made over the last few days. Take care!
My wife and I had a very similar experience when our youngest son was born in 1976. He was not expected to live at one month of age due to a congenital heart defect and developed heart failure. He had three cardiac arrests. We were transferred to UCSF Moffitt Hospital in San Francisco by air ambulance. Our son's life was saved there with open heart surgery. He is now 32 yeas old.
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