Three families that are very important to us have had big medical needs in the past two weeks. Jilli's best friend spent several days in the hospital with intestinal issues. The girls "big brother" is rejecting his liver again. And a family that Brent and I have been in a Bible study with their sweet baby is in the hospital having seizures. Each of these situations pull at my heart as we have walked with these families.
I was having a conversation this week with a few friends about how sometimes it feels awkward when you get a message from someone that says to let them know if you need anything while you are going through a medical crisis. The problem is that most of the time we have no idea what level of help the person is offering. Are they offering to cook, help with kids, sit with us in the hospital? And we never want to ask something that was more then the commitment the person was offering to make.
So I was talking with a few friends and we were talking about how it would be so helpful to know what the person is offering instead of a vague message. I also understand that being in this community I might have ideas that other people would not have thought of just from experience.
I want to put out there first that I struggled with writing this post. I don't want to make anyone feel bad. I also don't want to come off as asking for these things because that is not the case at all, this has just come up a few times this week with different special needs friends and we know that people are wanting to help and so here are some ideas of ways you could help different families. We all agreed that sending a message with a specific thing "can I help you with ______" makes it so much easier because then we know what is realistically being offered and often times in the moment those are things that we forget about needing anyhow. This list also probably also works for many other things like people having a new baby, any ill family member, a death in the family ect.
- Bring mail into the house
- mowing the lawn or taking care of snow
- putting meals in the freezer or offering meals when they get home
- Hospitals often have gift cards or meal tickets that can be bought from the gift shop and sent to the child's room (at CHW you call the gift shop and they will take your credit card information and deliver it to the child's room for you)
- help with child care for other children
- gas cards
- laundry help
- cleaning at the house
- bringing food to the hospital (it costs a lot to eat at the hospital)
- bring movies or entertainment to hospital
- visit the hospital (but know yourself and if you are someone who is emotionally going to be able to handle being supportive while being in a room with a sick child, some people can't and that ok but it can be hard on families to have to support others who come to visit them in the hospital)
- let families know you are praying for them
- offer to help with things you know they were signed up to do (serve at church, lead something at their child's school, ect)
- a basket of goodies at the hospital (I made one for a friend this week and included a blanket for the, hair ties, snacks, reusable cup, water flavoring, thank you notes, travel body wash and shampoo, tooth brush, tooth paste, journal, colored pencils.)
- toys for the kiddo to play with in the hospital (something that can be playing with in bed)
- a nurse thank you basket (we like to have a basket of candy in the room to thank our nurses, I have a friend who has brought doughnuts before for the nurses, we are thankful for the medical staff and that helps us to say it in a tangible way)
- feed pets
- clean out the fridge (when we come home from the hospital the milk has typically gone bad because we just don't think of that)
- picking things up from a store
Girl update:
Jilli had PT today. Her pulse ox was dipping more and her heart rate was going higher. They worked on blowing bubbles to work on her lungs. She also worked on pushing things to work on arm strength. Her PT sent in a letter to the state saying why she really needs more visits right now. If they deny that then we have to go through the formal appeals process.
I finally got a response from med supply. They agreed to send Tegaderm for Jillian however they are saying we need a letter of medical need for Lydia to have the same thing.... umm they use it the exact same way!!! I called special needs and they are going to write the letter for me. They are also helping me to figure out our options. They said they would not send me a list of how much insurance has paid for things over the last for years or what their contract is with our insurance company (this was from our case worker at the med supply company). I then called the billing department and asked them what equipment we own. They said Jilli owns everything but the oxygen concentrator and that Lydia doesn't own anything. I asked how in the world Lydia does not own that IV pole yet and I asked how far off she was from paying off her pump and they said that they would get back to me. I also asked them if they could give the info about our insurance company contract and they said they would look into it for me.
Brent called today to see what the status on the neb med was and they said that our primary still denied it however they would call state to see what their hold up was. They called me this afternoon and said state was sending all the paperwork back because the dr forgot to write her number on the form. It is on the form that went from the pharmacy to state but was missed on one line on the state form so they will not even look at it! They couldn't figure that out two weeks ago!? I am thankful to the pharmacy calling because how long would it have sat there at the state before they told someone of this clerical error? The pharmacy was able to negotiate with the state to get her one box of this neb med to take with us to Disney (we leave very very soon) and then we still have to jump through the hoops of resubmitting all of the paperwork for her to be able to use this med longer term but at least we have some to take with us which makes me feel better. I also picked up Jilli and Lydia's one reflux med at the pharmacy today and got home and realized that they gave us on for Lydia that was 0.6ml instead of 1ml so I called it was figured out that they filled the script she had from August instead of the current one so they are trying to get that worked out.
Overall though today I feel like we got someplace. I got farther with the med supply company. We have at least something to go in the nebulizer and Lydia's med is getting fixed. I am working hard not to be annoyed with how many steps this all is taking and focusing on the positives. One day at a time!
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| Jilli blowing bubbles in PT today |
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| Lydia playing while Jilli was in the swing at PT |
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