Bringing Phoebe Home

We will be hopefully be bringing Phoebe home this week under the care of Hospice. We went to a meeting with all of Phoebe's team this week expecting to talk about a plan for transplant. But once the team got to talking it became clear that Phoebe would not survive transplant and would suffer quite a bit if we tried to push forward. Further, the trauma that she has suffered neurologically was much more significant than they had previously thought. So even if by some chance she did survive, she would never be able to live, communicate, or do anything independently. That is not how we feel Phoebe would want to live. 

So our difficult choice has been made. We don't know how long she has to live--from weeks to possibly 2 months. We have been here for over 4 months straight. She needs to go home to feel sunshine on her face, see her house, and be with her dog again. 

We cannot thank you enough for all you have done to support our family and all the amazing work you have done for Be the Match. Although we could not go to transplant, we are glad that in some small way, Phoebe’s story resonated and drew some much needed attention to the need for minority donors. We know in our hearts that the work that you all did will save another life. We are forever grateful to our school community--we love you all and cannot thank you enough for all you have done. 

Lessons Learned from a Long Term Hospital Stay with Kids

Being in the hospital isn't fun. It isn't fun for a short time. And it's definitely not fun for longer stays.

Having your child in the hospital for a long time is a nightmare. At this writing, Phoebe has been in the hospital for four months. 

After her first month here, we looked for tips on line how to handle this, but didn't find anything. So I'd thought I'd post my "top 10 lessons learned" which we've learned the hard way.

1. Plan for the long term. You just don't know how long your child is going to be here. I remember when we were first transferred to Children's National Medical Center from our local hospital. I returned home to get a few things, and a friend of ours met us there and suggested throwing a few more things in a bag. "There's no way we're going to need all of this," I thought. How wrong I was. Better to take more than need something later. 
2. Be flexible. You just don't know what to expect when you take your child to the hospital (that's true for anyone really). Your child could be transferred to another hospital--or it may make sense to initiate the transfer yourself. 
3. Know your insurance and benefits. In Phoebe's second week in the hospital, I started getting calls from our insurance. I was very worried that it was financial related or that there was something they weren't going to cover (at that point we didn't even have a firm diagnosis). It wasn't that at all--they had assigned a case worker to Phoebe who brought up benefits that I didn't know we had. One of these, Best Doctors, enabled Phoebe's labs and other medical records to be sent to other experts. When you're dealing with a rare disease (such as HLH), this is of immense value. 
4. You are your child's best advocate. You know your child best. You're entitled to know what's going on with your child's medical care. Ask questions, and if they don't make sense or seem to contradict something said earlier, ask for clarification. Know the medications that they're giving, and be sure to ask about possible counter-reactions and side effects so you know what to look for in your child. Don't assume that the medical staff will volunteer this information.
5. Pace Yourself. Every parent will want to stay with their child for the duration of their stay. Most are lucky if one parent can stay at a time, considering work, other children, and the other responsibilities of life. Once it starts looking like your child is going to be hospitalized for awhile, make a rotation plan so that the primary parent can get a way. 
6. Personalize the room.... As much as possible, try and decorate the room with some of your child's favorite toys, stuffed animals,
   
   or pictures. A hospital room is never gone to replace your child's room, but bringing some color or some other things into it can only help.
7. ...But beware of overload: This somewhat flies in the face of the above tip. You don't want too much stuff in the room in the event you have to move rooms. If something happens and your child has to go to a different room (ICU, for example), you may be asked to vacate your room quickly. Hospital policies differ, and they may even differ depending on how crowded the hospital is. Trust me: cleaning a room of your child's belongings out of one room is overwhelming--both physically and emotionally.
8. Ask for help but be specific: Our community has really pulled together for us as we go through this; I like to think that most, if not all, will do the same. But people are sometimes at a loss as to how to help. Among the best help that we receive (aside from the emotional support of our friends and families) has been the yard work around our home, the shuttling of our son around (including the hospital!), and the meals that were made for our family. It's important to be specific...As a friend told us, "keep of list of what needs done--even menial chores like taking out the trash. If someone says to let them know what they can do, take an item off the list." It can be hard to ask for help, but all of this ultimately gives you more time and energy to spend with your child.
9. Know your child's rights as a patient. Make sure you know your legal rights (this can vary according to your state) as well as how the hospital views these rights. The National Institute of Health's MedLine website has some good resource regarding patients rights.
10. Know your rights as an employee. You'd like to think that employers would be compassionate and considerate when they have an employee dealing with a sick child. I've been very fortunate that both my immediate supervisors and my organization provide me with tremendous flexibility and support. Others--such as my wife, who was told she would have to resign--are not so fortunate. Make sure you understand your organization's leave policies and how the Family and Medical Leave Act works. 

Those are just a few lessons that we've learned. I'm sure we will learn more as we continue this journey.