Thursday, July 16, 2009

trip to the beach

Okay, so we did it. We went down the shore.

First, last week, Philip and I went all by ourselves overnight and spent a few days at the Borgota in Atlantic City. Very nice. We had not been overnight without the kids since October. In October, we stayed 3 miles from the house and my mom watched the kids, with my stepfather and a nurse. 

This time she had no nurse and we were maybe 4 miles from them. It was relaxing and we got really good sleep.

Then over the weekend, we took Adam to the beach. There was no way we could have done it without a house 3 blocks away. It is difficult to bring a toddler to the beach normally- and our 9 year old also requires "stuff" So, we had: boogie boards, wave boards, sand toys, towels, chairs, blanket, umbrella, drinks, snacks, etc. We also had to bring: Oxygen, clean and sand free clothing towels, bandaids, ambu bag, mick-key feeding buttons and tubes, and sterile water and gloves. That was all the stuff at the beach!

We needed the house close by because as soon as Adam was ready for lunch, we took him back to the house, let him eat there, bathe him and let him take his nap in a sand free environment. We were stressed trying to keep the sand and water out of the trach hole. It's almost closed up, so we put tegaderm (it's like saran wrap) over the tiny opening and then about 4 waterproof band-aids criss crossing one another. We also had him wear his high neck swim shirt on top. 

So, how did Adam like the beach? He loved it. He was crazy about the ocean. If we were not there to stop him, he would have run full speed into the water until he drowned. He had no fear at all and was really uninterested in digging or playing in the sand. We were basically at a 90 degree angle, holding around his tummy so he would not go too deep or get water by his neck. Phil, me and my mom traded this duty off, because our backs would really hurt after a few minutes and we wanted to straighten up. He would laugh and laugh and scream when the water would hit his toes and it was worth the work.

"The work" is always there. I have to say to myself am I saying "no" to this invitation/event/activity because it's dangerous? Or am I saying "no" because it's too much work? Sometimes, I initially say no to something and then I catch myself, and say "Okay, if he was a normal 2 year old, would I do this?"  Usually the answer is yes, and I start loading up the car and my ENORMOUS diaper bag.

Thursday, July 9, 2009

what to say and not

Pretty often someone will tell me a story about a friend who is in the hospital, or a complicated pregnancy that's not going well, or a child who is in the hospital - you get the point. And they ask me what can they do for that person. 

I get asked this because I spent 4 weeks lying on my left side in a hospital just before Adam was born. He spent 100 days in the NICU, 2 additional months hospitalized with his tracheostomy, and we have been in the hospital for 5 surgeries and numerous other illnesses over the past 2 years.

So... Everyone is different. I am not saying what helped me will help you, but here is what some people did for me and my family that was awesome. (in no particular order)
  • mailed me personal cards that were very funny, uplifting and reminded me of stories and past adventures
  • books (not deep- fluffy summer mindless books and funny ones)
  • burned cds/itunes gifts with really good tunes that were uplifting or reminded me of good times
  • care basket with nail file, puzzle books, snacks, pen, journal
  • friends paid for a cleaning service to come
  • lots of dinners that were given to me ready to eat- (i brought these to the hospital and was able to eat dinner while visiting with adam) Some friends even included desserts!
  • books, dvds, cards given to my other child- who was also in need of tlc during these scary times. 
  • People took Matthew out to do things with them
  • some medical equipment and special things we needed were paid for by friends
  • gift cards to fastfood places near the hospital
  • friends who would look up stuff for me on line and research things (support groups, doctors, treatment options) for me- weed it out and give me the answers I was needing because I had lots of questions and no time
  • people who did the everyday stuff for us: raking leaves, mowing my lawn, taking the garbage to the curb, food shopping
  • distracted me. sometimes it was terrible talking about it all the time. sometimes you just wanted someone to ask you about The Office.

Things that were not helpful to me.
  • someone telling me that they once had a friend of a friend's neighbor who had a similar thing happen and they were fine. Every story is different and believe me a 2 or 3 pound baby is huge. A few weeks makes a ridiculous difference.
  • people who talked about their own kids and their own issues trying to connect, but they were way off: like " My son has his tonsils out and I know how scary it is to have your kid getting surgery"
  • baby gifts. Until he was home- all baby gifts made me worry. 

It's still real hard for us to deal with parents who complain about kids who keep them up all night crying, or eating problems. Parents who you see are not really enjoying their good luck having healthy children. It's hard when people ask me "How much longer till he can get rid of a feeding tube" "So , is everything okay now that there's no trach?" " It's great, that's he's normal"  
Like, he's a special kid. He has cognitive and communication delays. These are impacting his development. Our long term goals for Adam are to be in a public school in elementary school, but he is special. I hope that he will overcome his delays and that they will not result in lifelong disabilities, but I am not a fortune teller. I love him. I am doing the best I can to help him grow.

Hopefully, If you are ever in a hospital, you will have caring family and friends to help you. We did and it made a huge difference.

Wednesday, July 1, 2009

Say Bye To Private Duty Nursing

After 18 months of 16 hours a day of private duty nursing, we are finally free. No more nursing. 

I am relieved that Adam no longer requires this many hours of daily care. It is hopeful news to us and it was been a ridiculously difficult time. Of course, it will still be somewhat hard- but this is great news for his care. 

I have some mixed feelings about it all:
  •  I'm glad I have insurance that covered private duty nursing, as many people do not have that in their policy, if they even have health insurance. 
  • It was like being on a reality show- hardly ever any privacy in past 18 months
  • There were often power struggles between us and the nurses and times when I really just needed them to back off.
  • They really did help to care for him and with so many medications, feeding tube feeds and the tracheostomy care- Adam was a two man operation most of the time.
  • We said our "goodbyes" to all of them and I really do hope that several will stay in touch, it was like they joined our family
  • A bit nervous about sleeping tonight, but I think it will be fine. We trust our doctors and I feel that because his ENT and pulmonologist at CHOP said no more nursing, he does not need nursing.