As some of you may have seen in my previous post, DD was diagnosed with a chronic form of kidney disease on Fri and, while we were hoping over the last three days that she would respond well to meds, she unfortunately has not and will likely need to be admitted to the hospital for 3-5 days to have the meds administered intravenously and be closely monitored. We have an appt tomorrow with the pediatric nephrologist that she saw in the ER (whom we loved and who spent over an hour with us, which we were eternally grateful for). I'm crossing my fingers that we wont have to admit her, but if he says we DO (and he prepared us for this possibility because her bloodwork came back pretty badly in the ER and he raised the possibility that the meds would not work because he levels were so low), I have no idea how to prepare her or myself. She is an extremely active toddler...how do I keep her busy and happy in the hospital? It is a children's hospital, but I don't even know what to pack for her or what they will provide. Will they let us sleep with her in her room? Do they have toys for her?
This sucks. It just sucks. Chronic diseases suck. DH has juvenile diabetes, so he is familiar with this a bit, but he was diagnosed at 10, not 2. Ugh.
Post by atouchofklasse on Oct 14, 2012 22:10:16 GMT -5
I'm so sorry you are dealing with this.
I don't have experience with this yet but I'm guessing your hospital may/will have a child life specialist who will be VERY helpful. Can you investigate whether they exist at the hospital?
I am so sorry you and your family are going through this right now.
I dont have any experience with a long hospital stay, but DS had minor surgery when he was not yet two. The hospital had plenty of toys in the waiting room and the surgery prep area, they also provided diapers or pull ups and kid friendly snack (cookies, popsicles, apple juice), but they did warn us ahead of time to bring our own sippy cups and pacifiers if we needed them because they don't have them. A lissomness called from the hospital a day or two before we went in to tell us some of that info. They also reminded us to bring DS his stuffed animal or comfort item for when he woke up.
I am sure the hospital has someone to give you all that info. The doctors office gave us a number to call specifically for that when we scheduled.his surgery. Maybe you could call the hospital?
Does your DD have a favorote show? Maybe you can get her some DVDs to watch in the hospital.
I don't have experience with this yet but I'm guessing your hospital may/will have a child life specialist who will be VERY helpful. Can you investigate whether they exist at the hospital?
I didn't even know these existed! I will call tomorrow to find out. Thank you.
Post by hereonceagain on Oct 14, 2012 22:19:35 GMT -5
My DD was only hospitalized for 3 days so this may differ (and it wasn't a chronic disease). My DD seemed to almost enjoy it there to our surprise. She got lots of attention with nurses and doctors coming to check her vitals often, bringing food, popcicles, doing tests, etc. and she had family visiting too. Our hospital only allowed one parent to sleep with her from 9pm - 9 am. At first I actually panicked about that but it worked out for the best. Then hubby and I could rotate getting sleep at home and/or get food. I never got more than 2 hours sleep at once with all the staff distractions, so be prepared for that. Our hospital has an activity room with fun stuff for kids, if they are up to spending time there. They also had great cable with unlimited cartoon network. We honestly didn't bring much at all for her. Overall, ours was an excellent experience (other thn the panic about medical issues).
My daughter was briefly hospitalized when she was under 1, so definitely not a toddler. But I can tell you that there was a bed for me in her room, and my husband and I both had ID bracelets that matched hers so we could always be with her.
There was a nutrition room with kid friendly snacks and drinks that we could go to at anytime, as well as a kid friendly menu to order from for our meals.
They had a toy room nearby that she could play in, or if she was too sick or not up to it we could check out a selection of toys to bring to our room. They also had dogs that visited daily if the kids were interested.
This was not a children's hospital, but was the pediatric floor of a regular hospital.
Hope your stay goes as smoothly as possible - so sorry to hear about your daughter's illness!
So sorry to hear about your daughter's illness and all the extra stress in your life right now.
Like PP said, there should be both a play area and child life specialist at your hospital. A few other things to consider: If your DD is feeling unwell and wants sedentary activities: - My kids think anything on the computer or tablet is a special treat. Lots of free apps are available. pbskidsgo.org also has lots of kid-friendly games. The hospital might even have computers you can check out to use. - A tea party or picnic in her hospital bed can be low energy but keep her busy. - Play-doh. Stickers. Make a collage out of magazine clippings, bring a glue stick. She can "write" her own story based out of the pictures in her collage. - Remember, it is okay for her to watch a bunch of movies during her hospital stay even if she doesn't get to watch them normally at home.
If your DD is feeling well and has lots of energy: - Mylar balloons can provide lots of fun (most hospitals don't allow latex balloons). - Bring a roll of masking tape. Tape out a hopscotch or four-square area on the floor of her hospital room. My kids also love roads made out of tape to drive cars or trains on. - Use her hospital bed sheet or a blanket to make a fort using the sheet and the chairs in the room. Bring a little flashlight for "camping" during the day. - Feel free to ask the nurses about ANY requests you have. You'd be surprised what they have available.
I'm so sorry you are going through this. Definitely call the hospital and ask for some guidance. One thing my kids love are color wonder markers and a magna doodle.
Post by mollybrown on Oct 15, 2012 13:55:49 GMT -5
So sorry to hear about your daughter's diagnosis.
My son didn't stay overnight, so I can't answer all of your questions. My son's hospital had an AMAZING indoor play area. It had play houses, slides, a play kitchen, little chairs and tables, and every toy you can imagine. My son was completely distracted until the moment he had his surgery. They offered tours of the facility, so definitely check into that if your hospital offers it.
They also offered juice and snacks. We took along his V Reader and a few other favorite toys, but he didn't really use them. Might be flammable, I would make sure they have TV and child friendly programming. TV is a big motivator in our household, and I imagine she might have to stay in bed at certain times.
Post by hannamaren on Oct 15, 2012 14:03:48 GMT -5
If it is a childrens hospitsl, they usually let parents spend the night. There is often activity rooms on each floor and also big activities (visiting sports teams, musical performers, etc) on any given day. If she cant go to the daycare room, you can usually take the toys out and bring them to her room.
DS was in the hospital for 13 days in July, but he was only 13 months and was so sick that he wasn't very active. Once he was feeling better, we could visit the playroom whenever we wanted and there were even playgroups (for non-contagious kids, of course). We were at a children's hospital, so they had all kinds of things for the kids. We could check toys out of the playroom to bring to our room and there was a library for books. Also in the playroom were crayons and coloring pages. We had Child Life Specialists come to our room every day asking if we needed anything.
DH and I both stayed at the hospital every night DS was there. There was a cot that was probably the size of a single bed and also a chair that reclined that we could have slept in, but it was so uncomfortable that we just scrunched on the cot together. The hospital provided pillows and blankets for us.
Pretty much everything we needed for DS was provided by the hospital. DS was not eating much, but they provided his formula (and later Pediasure), bottles, sippy cups, pacifiers, diapers, wipes, diaper cream -- everything.
In our hospital, there was even a Ronald McDonald Room that parents/families of patients could go for a meal, to do laundry, or take naps (they had sleeping rooms) or just time away. Patients were not allowed there, though.
Our floor of the hospital was a loop and there was a boy that was older than DS that had a plasma car that he would just ride around the loop over and over again. He was on an IV and his parents would be running after him trying to keep up. We would laugh when we saw him, but it was a good way for him to get his energy out. DS found a little push car that he LOVED and we would just push him around for lap after lap after lap on the hospital floor.
Let me know if you have questions. We work with a pediatric nephrologist for our care also.