Tuesday, November 11, 2014

Ministering to a Family Dealing with Hospitalization (of a Child) and an Update on Matthew

I've spent an inordinate amount of time in hospitals. I've held bedside vigils for and with both of my grandparents, my Uncle, my brother, and one of my best friends. So I've learned a lot about "being" in the hospital, and about loving on the family members of those ill.

This hospitalization with Matthew was the first time I was the "primary" person though, rather than a support person so I was more a direct beneficiary of the efforts of others.

I thought I'd share the things that have blessed me in case you're in a position to minister to another family dealing with a hospitalization. I wrote this from the perspective of a parent with a hospitalized child, but many are relevant for all ages of patient.

-Pray WITH and FOR the Family: Please pray for the patient, the family, and the medical staff. If you visit, please offer to pray WITH the family. It's such a tremendous encouragement.

-Allow the Family to Update as they Can: Unless you're immediate family, please consider checking facebook, your church prayer chain, or with someone other than the primary care giver(s) for updates, at least during the hospitalization. While it was lovely to know that so many were concerned about Matthew, there were times I just couldn't answer all of the calls and text messages, and I felt rude.  If you're close to the family, perhaps offer to be the "go to" person for keeping the extended circle updated if there are lots of people asking.

-Feed the Family During the Hospitalization: Hospitals feed the patient, and no one else. Especially when the patient is a child and a parent wants to stay around the clock, it gets expensive quickly to eat 3 meals a day in a cafeteria, not to mention, Cafeteria Food usually isn't awesome.  It was such a great blessing to us to have people bring meals to the hospital for us. Even if the person is returning home every day, having a meal made already is one less thing the person needs to worry about while trying to sneak in a shower or a couple hours of sleep.

-Offer Errands: Especially if the hospital stay is unexpected, the family may need someone to go to their house and get essentials for the child or parent, such as medicine, phone charger, pajamas, toothbrush, etc and bring them to the hospital. Or whomever is caring for other children may be in need of help like grocery shopping.

-Visit: If the hospital and patient's health allow it, consider a visit. For our son, seeing a friendly face that WASN'T a doctor who was there to do something to him was a huge diversion for him. It was also a blessing to us, because being in the hospital room around the clock can get lonely...and boring. Visiting also allows the tending parent to just sneak out for a walk or a cup of coffee for a minute if they need to. Speaking of...

-Caffeine! If the parent has a favorite pick-me-up, consider bringing one. This goes back to the whole, hospitals don't feed you unless you're the patient thing. There were times I really wanted a cup of coffee, but didn't want to leave Matthew long enough to go all the way down to the Cafeteria. Caffeine is super-helpful in times of long-vigils!

-Babysit: If the family has multiple children, offer to babysit the siblings still at home. You might also consider helping with things the kids may not be able to do, like their laundry.

-Distraction: Especially if the patient is a child, something new to do is a huge help in passing the time away. Many people end up hospitalized without knowing it was coming, so they're not prepared with a suitcase full of things to do, nor is it even really practical to bring a bunch of stuff. Consider bringing a small gift or loan of a toy, book, or activity. We were especially blessed by this because it often helped "reset" Matthew's patience clock, especially during our confinement. This doesn't have to be expensive. You can shop the dollar store or the dollar spot at Target. You can bring a library book. You can bring something you have already to loan. You can bring a stack of photos to show the child and talk about. This can be inexpensive or free, and is a huge blessing.

-Staples and Paper Goods: This one didn't apply to us as much because our hospitalization was relatively short but it has been relevant in other situations I've dealt with. If a hospitalization is prolonged and/or ends in death and/or has lots of family members still at home or coming to visit, consider bringing by the essentials like milk, toilet paper, paper towels, paper plates, etc.

-Gift Cards: This is another that wasn't relevant to us, but I've watched many friends go through it. If the hospital is not close to the patient's home, lodging and gas for the parent can get very expensive, quickly. Our hospital allowed one parent to stay overnight, but not every hospital does. If a parent is commuting a long distance, consider a hotel gift card or donating loyalty points so they can stay nearby for a night. Gas cards are also tremendously helpful if they have to travel a long way. We were blessed that our hospital allowed me to stay, and that it was only 20 minutes away from our home. Many people in smaller or more rural areas have to travel significantly farther, especially for specialty hospitals.

-Feed the Family When they Return Home: Just because a family is home does not mean the work is done. We've been home 2 weeks. A friend offered to coordinate a meal train for us and I almost turned her down because there's nothing wrong with ME. I was perfectly capable of cooking and I felt like the need wasn't "big enough" to ask. I am so grateful I let her talk me into it. The first week, we didn't do anything except let Matthew sleep. He and I didn't leave the house. He was weak, tired, and immuno-compromised. We were also majorly sleep-deprived. As we got our feet back under us, then began the task of cleaning the house, sterilizing everything, doing the laundry, running him to follow-up appointments all over town, filling prescriptions, etc. Our church has brought us meals every other day for 2 weeks and it has been a huge blessing. I haven't had to worry about grocery shopping or cooking. Between being exhausted and overwhelmed with tasks, I can't tell you how much not having to worry about dinner has blessed us.  We had leftovers from every meal so each meal fed us for 2 nights.  Our friends from out of state even had a pizza delivered one night so this is a way you can help someone even from far away. Takethemameal.com is my favorite website for organizing a meal train-offer to set one up for your friend!

Thank you to everyone who blessed us in these and many other ways, and I hope these suggestions are helpful to anyone in the position to love-on a family dealing with a hospitalization.

Update on Matthew: Thanks also for continuing to pray for Matthew. He continues to get better every day. He had his first Cardiologist Appointment last week. The doctor found some damage, but he thinks it is immunological in nature and that it will heal after the disease completely works its way through and out of Matthew's system. He's keeping us on aspirin and we'll watch it, but he encouraged me that he would be fine and strongly advised me "DON'T GOOGLE IT!" which I did and then freaked out, so I decided to listen to what the doctor said after all.   The great news is that there was no sign of aneurysm. The "danger zone" to develop one is 3 weeks post onset through 18 months so they have to keep checking, but for now, there is nothing!

His energy and strength come back a little more every day. We were able to get out for a few outings last week and that was a great boost for him. I took him to church this week, which I think was his longest outing. He really enjoyed it and did well, but he was exhausted when we came home and struggled through yesterday a bit with being over tired. I'm still learning how to gauge his capacity, but the wonderful thing is that HE is learning too. He has quickly developed a lot of self-awareness and will tell me if something is in pain, or if he is tired, or needs to sit down, or whatever. I've really tried to teach him to listen to what his body is telling him it needs. He's good about asking to get into his stroller or into a shopping cart or on a chair if he needs a break. I'm so grateful for this because he's normally your typical 3 year old, "I'll do it myself" sort of kid. I know this self-awareness is supernatural and I am thankful for it. His skin is still peeling really badly but it doesn't scare him any more. I know he still struggles with shooting pains, but it seems to be less often. His color has come back and his eyes no longer look sunken and shallow.  His appetite has come back too. We have another echocardiogram next month to check his heart.

We've been so grateful for how quickly a lot of things have improved.  Thank you for your prayers for our sweet boy!

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