Monday, February 20, 2012

I got a little creative...

I've been working on blankets for the PICU, and I will post pictures later.  I did complete another project I wanted to share:

Saturday, January 28, 2012

So What Just Happened?

Ah, we are home!  It was so good to sleep in my own bed, and based on the smile on his face all evening, David was also really happy to be home.

I'll probably not be blogging our everyday life now that we're home, but I thought I'd post one more time and let you all know the big picture.  For the most part I kept the blog to pretty positive thoughts.  I'm still hoping for the best, but I also want to be real.

So far in David's life we've always planned ahead, thinking toward a day when David is an adult and will need someone to take care of him.  With this latest turn, the doctors have been clear that David's time with us is limited.  David has a disease, or a condition, which they don't have a name for that means his brain is deteriorating.  Either due to ninja seizures or a neuro-degenerative disease/condition David will continue to lose things he knows and can do, and even things his body can do for him.  Eventually this will be fatal. 

They did a lot of interventions at the hospital and really cut down on the amount of ninja seizure activity.  There is no doubt the the coma maneuver really helped.  Even Hassani noticed that David seems so much more playful and with it than before he went in the hospital.  However, they do predict that David will continue to decline.  They hope we will be able to hold him in a plateau here for 3-5 years, but it could also happen that he continues to decline at the fast rate we saw in the past few months, or it could be something inbetween.

We are going to continue to try new medicines or ideas his neurologist has, but we have decided that it would be best for David and our family to try those things at home.  David's medical team supports us in this decision.  We're going to make the most of whatever we've got.  We could have years left with David, and I'm not going to ruin them worrying each day what tomorrow will bring, and hope you all won't either.  We're going to keep doing the things that are good for David.  We're going to work on making him strong again and continuing to help him learn to communicate better.  And we're going to appreciate every smile and laugh and all the joy he finds in life.

I wanted you all to know about this.  We have chosen not to share with Zeke, Hassani, and Gladys what the doctors are predicting for David until we find ourselves closer to the end.  I would appreciate it if you helped us with that.  They all care so much for David, and I don't want them worrying about him any more than they already do.

Thank you all so much for the help, support, and prayers of the past couple weeks.  In so many big and little ways you were here for us.  We love you and we thank you!

Friday, January 27, 2012

We're Coming Home!

We are on our way to discharge apr├Ęs tonight if all goes well. The seizure activity hasn't stopped, but we will try to manage it from home.

Thursday, January 26, 2012

Good news to pass along

After typing the last update I forgot to include the happiest news of the day... David has been awake and alert and playing all afternoon! Hes slowing down now and just watching some tv, but we've had lots of smiles. If you have Facebook access I was able to post a few pictures there, but I can't get them on my blog, sorry!

He had a really good day. He's in love with his day nurse, grinning from ear to ear whenever she came in the room! Of course she's in love right back. It's really been a good day.

Thursday Update

I'm so sorry I didn't post earlier. It's been a busy day, along with some happy and sad.

Bottom line, they haven't been able to stop the seizure activity, though it is much better. They are not seeing the steroids making a difference. We have requested and the doctors agreed to work out a plan where David can be treated at home. They have another medicine to try, but we can try it at home. We won't be constantly watching the EEG, but instead just judging by David's behavior and gains or losses. He can be with us and go back to school and enjoy the things he loves!

So, we're working toward going home, knowing he'll likely still be having losses, but hoping they will be much slower now. We should have a meeting with the doctors tomorrow or Monday. I get training tomorrow on using a home suction machine. (David can't really handle his own drool and mucus any more. This might be part of his losses, or it might be a side effect of a med. we'll be trying to figure that out.) they are easing him off of some IV meds. Each thing is a little step closer to going home. We still don't know what tomorrow will bring, but he's smiling again and we'll make the most of every day!

Wednesday, January 25, 2012

The up and down day

It's been an up and down day. David was awake this morning and I got to play with him and make him smile. That felt so good, but I was really bothered that he wasn't trying to touch his iPad or play with it. He also sometimes just stared at nothing and I couldn't get his attention. I'm hoping he'll be better tomorrow, but playing with him today just brought home once more all of his losses.

The neurologists stopped by and said they hadn't had a chance to look and see how he was doing on the EEG yet. They said if the EEG continues to look good, we could discharge on Friday or Sunday. Something in that range.

David got a PICC line today, which is a stronger and better kind of IV. Call it a super IV if you will. This will be used for all his IV meds and lab work. When they were prepping for the PICC line insertion I finally reached my overload. You know that point where a couple really small things don't go your way, but they all add up to a lot of sobbing? I was the sobbing one.

The only problem with crying was I just couldn't stop. A nice nurse checked on me and someone called a chaplain, who showed me to a quiter room so I could just cry for a while and talk things out with her. Hospital chaplains are the best!

After the PICC line was put in, he was moved to a regular hospital room. Around 9pm he had a seizure, the non-ninja kind. They gave him some IV medication to stop it. So we have a lot of questions for the doctors tomorrow.

Mid morning update

The PICU team did its rounds and they are deferring to the neuro team as to whether David should stay in the PICU or return to the regular part of the hospital.

They have ordered a PIC line for David instead of the regular ivs that have had to be replaced multiple times. That should be done this afternoon and will be a welcome relief. I think it was 6 separate sticks yesterday. It will be good to have a longer-lived IV access for labs and meds.

David seemed more alert this morning, but was still pretty spacey. He'd be looking at me or watching his iPad, and then would just stare into space ignoring me. This part is very hard. The neurologist told me that when he wakes up, that will be our new normal. I'm trying to be patient, but I worry, because of the staring, because he isn't even trying to lift his arm to the iPad. I am wondering if he's actually had more losses in the past week.

So I'm waiting for the daily neurology check in. It was at 4:30 yesterday. I don't know how fast they thought they might see the effects of the steroids. We'll see what they say. At least David's door faces the main hallway the doctors use. I'll be stalking the neuros!