Excited and stressed

We are almost finished with Logan's most recent road to recovery! Wow, an end in sight. Seems like a dream! We plan to be home in a little less than a week. Logan is doing great and could probably go home today but we have to be patient and finish putting a few more pieces of the puzzle together to make our home ready.

Today was a big day for me when it comes to getting Logan home. We had his care conference today and had all the big players involved...county case manager, care manager from home care company, care manager from Children's, lead RN from pulmonologist group, PICU physician, respiratory therapist and respiratory therapist from home supply company as well as Joel and myself. This conference was to get the details of discharge lined up. We have ironed out the big stuff and I am happy with the outcome.

We will be going home with an appropriate amount of nursing care for Logan. That was my biggest concern. I wanted to make sure we had enough trained hands to take care of Logan so that we could continue to be a family despite the hospital within our home! I titled the blog, excited and stressed because I am both. I am so happy to get us home but nervous. The meeting today calmed some of my nerves now knowing that we have many resources to draw from. We will not arrive home and be isolated. We have help in the home and just a phone call away. We have advocates. We have always had these people, but now we are all on the same page and Team Logan will continue to move forward.

On the Logan medical update front, he is still weaning off of the narcotics and benzodiazepines. These are the medications used to wean him down from the high doses of medications that were used to keep him asleep while he was intubated. We found out this morning that the taper down of the drugs was too fast for Logan. He was agitated, had a fast heart rate, and some diarrhea. Poor little guy was pissed off! So a couple of medication doses later and we have a snowed and snoozing kid. He is happy as a clam.

His tracheostomy is doing pretty well. He does have an area of breakdown at the site that we are watching closely. The skin nurse will come through with some ideas to help troubleshoot the problems that may arise. He is getting stronger every day and when I picked him up last night he snuggled into my arms. I am so glad to see my little man is back! I was so scared that the two hour seizure would have scrambled his brain to a point that he may not wake up as the same Logan I knew. I think I have been put at ease! What a miracle!

Our genetic physician stopped in today to check on Logan. I asked her more about the seizure and her thoughts about Logan's future and if seizures were in it. She said it is possible. He may be having subclinical seizures (those we don't see) or he may have just had a febrile seizure that was complex. She said the keppra (seizure med) will need to be continued for many months until neurology is ready to wean him off but he will need to remain seizure free in order to stop the medication. She said she would become concerned if he was having seizures while on the keppra.

This has not changed her search for a diagnosis. She still feels strongly that our answer lies in the DNA sequencing that is in progress. She asked that I keep in touch with her if symptoms arise or change and that as soon as they know anything they will also be in touch. I really appreciate the conversations I can have with her. I feel as though she listens to me and takes my opinion into account. Sometimes doctors can make you feel dumb. This is the same in any other situation where you know less about something such as when the mechanic tells you the thingymajigger in your radiator is broken!!! With her and almost all of Logan's doctors, I do not feel that way. I feel like part of the medical team and that is because I am his mom. These doctors have been around the block a few times and understand how important the family is. OMG, they listen!!!

So I finish this post with a smile on my face. There are still hurdles ahead but we have a plan in place and my to do list can be accomplished!