Hopeful for Homecoming

Sent in by Nicole 12/1/2010

It’s so hard to believe we have been living in a hospital for almost 8 months now. Each month has honestly felt like 3 years. The days and weekends run together and Turkey Day wasn’t much different than any other day of the week, except we did go out for breakfast at Mimi’s Café and took Tanner to the movie Tangled, which he sat through pretty well until the last 15 minutes. I baked a little bit over that weekend and gave some treats to several nurses, doctors and staff at the Children’s Hospital. It felt good to do something nice for someone else, especially those working away from their own families.

Wrenn continues to challenge the doctors. A couple days after her bronc she started wheezing and so they did treatments, thinking the procedure had stirred up secretions. Then they thought it might be a need for more lasex so they upped her dosage and changed it from IV to G-tube form. Most kids don’t respond well but she has done great on the switch, the wheezing however hasn’t gone away and the cause is still a mystery. It’s a day-to-day issue.

The doctors can’t explain why she’s still on oxygen (1/2 liter). Every time they try and wean her she drops to the mid 80’s, which isn’t horrible (since we’ve seen her in the 30’s) but she needs to stay in the mid 90’s.

When I think about what her body has been through, MAJOR transplant surgery, it takes time for all those tiny little parts to reconnect and start working again. I am told that many of these kids (NICU babies included) thrive once they get home in a positive environment and routine. I pray that Wrenn will be one of those kids and that the ‘issues’ will just go away. If there’s one thing I’ve learned, timing is everything.

Twenty years ago the doctors at Children’s had NO interest at all in doing lung transplants. They felt the organ was too delicate and that the results would be a disaster. A few years later they changed their minds but found that the odds of survival for lung transplant recipients were not as good as other transplant recipients (kidney, heart etc.). The lungs are exposed unlike the heart and kidneys, which are protected. When a person gets sick the lungs suffer with viruses and colds. Congestion and infections make people very ill and sometimes hospitalized. Viruses are particularly bad for lung transplants recipients and can cause severe rejection, resulting in death. This is one reason the doctors prefer Wrenn leave the hospital, especially during flu season. She cannot afford to get sick, EVER. She will have 3 flu shots this year. Bugs LIVE at the hospital and so it is the WORST place in the world for an immune suppressed person to stay. Ready or not, we are hoping she comes home next week.

Coming home means that WE are taking care of Wrenn. It is going to be really tough in the beginning. She has medications due every two hours. She is still on continuous feeds and so I’ll have to make sure her feeding bag is always full. She can’t burp and will need to be vented with a syringe every couple of hours because she of her GI issues. The home care that we provide is just part of the normal parenting part of her days ahead. She will, however, be going to what is called ‘Clinic’ every Monday and Thursday. On those days I draw blood from her broviac and bring it in to have the levels tested. They want to make sure she is not getting too much or too little rejection medications. They’ll also check her Potassium, Calcium, and Hemoglobin levels. They do a full check-up on her those two days to make sure she is problem free. In conjunction to Clinic she will be at the hospital three to four days a week for different developmental therapies. Our days at the hospital are not over with yet and until they feel she is ready to be totally discharged, we will continue that routine. Typically it lasts three to four months post transplant but varies patient to patient.

Hard to believe that Wrenn is number 84. There have only been 84 infant lung transplants ever done in the world. Even with all the precautions, the statistics are not favorable. 50% make it to 5 years of age. 20% make it past 10. We chose surgery because 20 years ago they didn’t want to do lung transplants. Obviously something changed their minds. WE are banking that medicine will change for the better in the next five years and the statistics will improve. In the last five years nothing has changed. Medicine is relatively new and I just know she is meant for great things. We have continually told our families that this situation is a leap of faith.

Holidays with Wrenn will always be a big deal for our family. I want to make sure that Wrenn feels like the most special little girl in the world. I want every day she is with us to be great. I want Tanner to find inspiration in her life and celebrate the opportunity she has been given. When I say that we have had many blessings that is ALL I see; an opportunity to beat the odds and to celebrate her life. I just know her journey will be one for the books. I visualize her telling the story to her own children one day.

I’m an emotional mess when I think about her coming home. It’s a HUGE deal. It’s a blessing. It’s scary. It’s exciting. It’s about time!