Sams Blog

We are back in the hospital. This is getting really old. I am sick of the hospital, but at least we are getting better at it: we have located the tea kettle in the kitchen on 9 East (we are on 9 North) so that makes tea easier, and free since we also remembered to pack tea bags this time. We finally know how to pack enough clothes, and that clean socks are really important. We have learned to shower when you can, because you don't know when the next chance will come. So if it is at 2 am do it then. We learned that the free chocolate pudding (that is really for the kids) is pretty good, and makes a decent (and did I mention free) bedtime snack, but sometimes the day is bad enough (like today) that the cookies at Au Bon Pain are really worth their inflated price. Also, we know that it is worth any amount of money sometimes to not have to make your own breakfast. So, even if we gain too many lbs while we are here we are doing our best to make it through.

So, for new skills, I have learned to program the IV pump, we have learned how to reset the limits on the monitor so that it beeps less (it is usually frowned upon to use these 2 skills however) we learned how to look at the record of "events" on the monitor, where an event is anything that sounds the alarm. We have re-learned (from NICU days) that when your child's heart rate drops, you should wiggle them to make sure it comes back up.

So those are the new skills. We have learned other things:

We have learned that hospitals sometimes want your child to get more sick to be sure of what is wrong before trying to fix it. This is a hard lesson for a parent.

We have learned that it is not always peaceful to watch your child sleep soundly, that it could mean that they are really sick.

We have learned to fear 4 a.m. because that is the time that shunt-failure vomiting is most likely to occur.

We have learned that even if we are not MDs sometimes we know more than they do and so it is important to speak our minds.

these are things that no parent should have to learn. No one should know their child's baseline heart rate, respiration rate or O2 sat rate. No one should know those rates for when their child is sick. No one should know what the letters ICP stand for.

We have learned that what appears to be the light at the end of the tunnel can also be a train that is heading straight for you. So don't be fooled into complacency.

We have learned that we love our child more than anyone can possibly love a child because we know that she is a gift that can be taken from us at any moment.

And we have also learned the value of friends and family that love you and your child and get you through these awful times.

I am sorry to sound self-pitying. But, sometimes, that is just the way it is.

Being home is actually kind of hard. We are both (F and I) adjusting to it slowly. We got home last night and all the relaxation of the mini-vacation we took to the beack after leaving the hospital was gone. Something about PTSD and worrying aobut rushing back to the hospital. I wonder if we will ever be able to relax at home again. We are just now beginning to process all we have been through the past month. Sam seems good and happy to move on. There are some terrible two tantrums going on, which are no fun, but I guess it is good that she is experiencing that. So we have some parenting to do, but she seems herself and ready to go.

It is really hard to sit in a hospital and look at your little one so helpless and sad. It is much harder doing this with a 2 year old who understands a lot more than it was with a newborn who didn't know any better. It was heart breaking. But, she wil not remember this. Only we will.

On a happy note, she got to enjoy the beach for her first time. SHe was tired most of the time we spend on the beach, but she did get a kick out of the sand, and did like putting her feetin in the water and let the waves come up over her ankles. She wasn't sure at first, but then asked for more and was laughing about it. To see that joy and wonder in her eyes makes all the rest worth it. I am so glad, and amazed, that she can still have such joy and wonder in the world. Unfortunately, we didn't have our camera with us, since we weren't planning on vacation, merely hospital time.

Her hair is growing back, but people still give you the loko when they see her heard. I don't blame them, but it is hard to see it. We try to keep a hat on, but she doesn't much care for that.

THe constipation is no fun. Thankfully we have her on Miralax now, insted of the other meds. It makes her poop multiple times a day, but she seems much more comfortable than she did on the senna which seemed to make her go 1-2x/day but really big ones that were really uncomfortable. Sorry for the TMI, but it is what it is.

She is drinking more, eating more, which is all good. She is sleeping better. NEed to get her back on her schedule now, though. And she is wanting to stand up more now, and sit up more, so she getting her strength back. Finally. We have missed our little girl, and it looks like we finally get her back. I hope we can enjoy part of the summer anyway.

I can't thank you all enough for all your help. It has been so invaluable to have your support.

Now, let's have some fun!

I can't believe I haven't posted since July 1. Well, really I can. The hospital internet made it impossible to access this site due to their firewalls. So, it was only posted on CarePages.

It has been a very long month, to say the least. I am so glad things are finally looking up. I won't repost the details here of the hell of the last month, resulting in 4 surgeries and 3 hospitalizations. Finally, I think Sam is doing well.

Oops,the ice cream delivery man is here, we are finally on a VACATION and so I will have to write later.

Lisa