Saturday, December 25, 2010

Wrenn's First Week at Home


(Sent in by Nicole on Christmas Eve, 2010)

It’s been one week now that we’ve had Wrenn home. I will tell you the excitement was so overwhelming I don’t think any of us got any sleep that first night (except for baby Wrenn, who has slept soundly every night!).

Monday night
up until 11pm we received 10 boxes full of medical supplies and medications. The very next morning a nurse from a program called ‘WINGS’ arrived to train me on how to do Wrenn’s infusions through her broviac (The line that runs directly into her heart). I won’t lie, I was pretty nauseous the entire day from stress. I felt like an elephant was on my chest and couldn’t take deep breaths. There was so much to do and I was very overwhelmed to the point of almost cracking. Wrenn is fed via her G-button every 3 hours, all day and all night (Until she learns to eat). She receives 12-14 meds daily that rotate every 6 to 8 hours. Many of the medications have to be done exactly 12 hours apart to avoid rejection; get the dose wrong and I can cause her to go into severe rejection: NO PRESSURE!

By the end of Tuesday, I realized I hadn’t held Wrenn once. I was so busy trying to get everything straight that I didn’t have the chance to be mommy (to her, OR to Tanner). Every second she wasn’t awake I was preparing the next feeding or next medication or putting supplies away from Tanner’s reach. We were supposed to have a physical therapy appointment that same morning at 10:30 but didn’t make it to the hospital. We never even left the house. It took all I had just to get everything into one day.

At that point, I was pretty upset about how things were going because there was no routine and everything was so new, even though I had watched the nurses do these same things a hundred times, but this time, I was on my own. The other issue I needed to address with great care was Tanner’s reaction to Wrenn and the lack of attention he’d receive as I tried to get everything organized. Frustrated, I later called my mom who reminded me that loving my child and nursing their needs, is just as important as play time or cuddle time. That made me feel much better because everything I do for her is out of absolute necessity for her survival. The responsibility is overwhelming in just the execution alone, especially for someone who doesn’t have a medical background.

Each day in that first week I told myself the routine will get easier. Tuesday morning it took me an hour to pull all her medications and then I took too long to administer them. However, this morning (9 days later) I timed myself and it only took 20 minutes: I even measured out the medications for the entire 24-hours. I have improved in several areas and I know it’s just a matter of time when everything will feel second nature.

Tanner has been a doll. He has no issues when we hold Wrenn but sometimes he likes to cuddle at the same time on our laps. He plays with all her toys and throws away her dirty diapers. In the morning he asks where Wrenn is and asks to see her. He has been a perfect sibling and I feel so blessed that he has adjusted so well considering all he has had to deal with in the last 8 months.

On Monday and Thursdays I have to draw blood from her broviac line and take it to clinic, where a team of doctors and nurses from the pulmonary team evaluate her progress and overall health. The appointment is at Children’s and lasts anywhere from thirty minutes to two hours, depending on my questions and their concerns. Right now Wrenn has a scheduled bronc on Tuesday. On Monday she will be put under for the profusion test and CT Chest Scan. They are always checking for severe rejection and oxygenation. If all goes well this will be the last bronc until March. We should have the results by the 30th of December.

Clinic is typically twice a week but I am hoping after this bronc that we might go to once a week. Eventually when her labs level out on her rejection medications Dr. Huddleston will take out her broviac. Labs will then be drawn once a month instead of twice a week.

I think once the broviac and IV infusions go away I will be less stressed. Adjusting to two children at home, and then having one with special needs is challenging, but I know things will get easier or at the very least be more familiar.

Wrenn is such a good baby. She is already spoiled and prefers to be in the living room with everybody. It melts my heart, knowing that she likes being with her family and is a huge cuddler. She is getting over her oral aversion and eats peas, peaches and loves bananas. She even takes water from a spoon. It’s cute seeing her eyes widen as she swishes around new flavors. My hope is that the G-button will go away within a year and she’ll be eating like a normal baby. In order for this to happen she will have to swallow her medications by mouth. Baby steps! I keep saying we’ll get there in WRENN time!

When Tanner lays on the floor beside her she gets the biggest smile on her face. He is great entertainment for her and NEVER stops! Luckily he is used to being at home with me and can play on his own for long periods. I am so proud of him for being such a great helper and a compassionate big brother.

Wrenn smiles all the time. She wakes up happy, goes to bed happy and plays happy. It amazes me how perfect she is after all the pain she has endured. I am in awe at her strength and desire to move forward. She seems to have no limits but only leaps and bounds. She IS my inspiration!

I will tell you, I’m a planner and what I’ve learned from this entire situation is that you can’t plan too far ahead. Life for us is still day-by-day because things can change in a New York minute; for the good OR the bad. I am very thankful to have such a great network of support both IN and OUT of the hospital! Our family has extended beyond DNA and we count our blessings every single day.

Oh, and to the Mason Jar Guardian Angel, thank you!

Monday, December 13, 2010

On the Eve Before Wrenn Goes Home


Sent in by Nicole at 1 am on 12/13/2010 - the day Wrenn is to go home.

Yesterday Dr. Barb from the NICU visited Wrenn and we chatted for a good 45 minutes about how things were going. I explained to her that I sat with tears in my eyes last Thursday as I asked God to please let my daughter's nagging problems come to an end. Dr. Barb then told me a touching story about a time when things looked very bleak for one premature baby and then, as if a gust of wind came into the room, the entire situation for that baby had within minutes changed for the better before everyones' eyes. Dr. Barb said she still has no idea what happened but knew it was done by a higher authority. She said things like that happen in hospitals all the time and I believe her because it happened for Wrenn, who is acting like a normal, healthy, happy little 8 month old baby.

Last Thursday a CT Scan showed that Wrenn had accumulated fluid near a ligated duct; the fluid is chylus, which seems to be the entire reason she was getting puffy and needed oxygen. The duct can take up to six months to heal so we will repeat the CT Scan next week to see how things are going in the chest cavity.

On Friday her transplant surgeon, Dr. Huddleston, put in a pigtail so the fluid could drain. Within seconds her wheezing stopped, her breaths became less laborious and by the weekend she was breathing room air. One little thing (2 oz of fluid) caused all those problems. That same afternoon we also tried bolus feeds, which means she now eats every three hours instead of continuously. Her gut is digesting her food much better and her gas pain has disappeared. Her belly distention subsided and she is the happiest little baby ever! These blessings have given the 7 West Team the confidence that Wrenn will be discharged locally on Monday.

The idea of bringing Wrenn home excited me to the point of tears but I was much more excited for Wrenn, who has never felt the wind on her face, or felt the heat from the sun shine down on her body. I imagine she’ll be exhausted from all the new things she’ll see in just the car ride alone. For the last 8 months she has lived in a space that is only two feet wide and five feet long. Her only stimulation has been people and the surrounding of beeps and bells going off every minute of each day. She has listened to only music and memorized the eyes of those behind the mask. I’m certain she could recognize the now familiar voices of those who have cared for her on a daily basis.

It is amazing how much better Wrenn looks now that she’s breathing easy. She is always at peace, smiling, rolling, playing on her belly, kicking her feet high, chewing on her fingers, reaching against gravity, focusing on moving objects and is just moments away from her first giggle. Nobody, including her team of doctors, can believe what a difference 24 hours made in her improvement. I, like Dr. Barb, can only say that prayers were once again answered at the right time.

Several nurses have told me that they’ve had their own kids in and out of the hospital here and there or in the NICU for a few weeks and said it nearly killed them. Most people can’t imagine living this type of life for 8 straight months, especially with another child to care for. To be honest, I’m burned out. I feel like I’ve been doing this for 3 years. A week felt more like a month. Nights were sleepless and still are with the anxiety of not screwing things up when she gets home. Panic strikes my face at the fear that I’ll miss something or that Tanner might pull out her broviac. I’m looking forward to the day when I do things without thinking about them because it has become second nature. I’m sure it won’t be long.

How have I survived? First and foremost my family in Orlando, the Winnie Palmer nurses kept me sane when I rode the first part of the rollercoaster. They were there for us and are still a big part of Wrenn’s life today.

The doctors and nurses in the ST. Louis NICU kept Wrenn alive long enough to get her new lungs. They had the hardest job because it was the darkest days for our family as we waited those terrible 7.5 weeks. I remember Dr. Sweet’s last words before placing Wrenn on the list: ‘We feel she’s a good candidate, hopefully she’ll live long enough to receive new lungs.’

The CICU and 7 West nurses and doctors will continue to be our extended family as we come back and forth to St. Louis for the rest of Wrenn’s life. She will have the same team of doctors forever. The same dietician forever. The same procedures forever. The St.Louis Children’s Hospital is Wrenn’s new home away from home. Over time we hope to see great improvements for lung transplant recipients and a positive shift in the survival statistics.

The coordinator in 7 West, Carol, today told me that Wrenn could end up back in the hospital for a few days, to a few weeks, to a few months if she gets sick or has an infection. The transplant team wants to hear about a sneeze, a cough, even a slight runny nose; all require a phone call and an office visit. What’s great is that her doctors (and there are MANY of them), know Wrenn and her entire history. So we have an even larger extended family beyond our own DNA.

Around Christmas, Wrenn will have another profusion test and bronc, to test for possible rejection. If all looks good, she won’t have another one for three months (unless something comes up, it could be sooner).

On Saturday afternoon, the team at Children’s put in Wrenn’s car seat. My eyes welled as the reality of our news had finally hit home. Wrenn is coming home. My little girl is finally leaving the hospital and beginning her new life with her family. At that moment I wondered how I had done it all those months without losing my mind. Prayers. Guidance. Family. Friends. Neighbors. The Ronald McDonald House. Doctors. Nurses. Strangers. Emails that kept me going when I didn’t think that I could. Blessing after blessing pulled me through the darkness. Yes, I know the road ahead is unknown, but at this point, everybody’s road is unknown. Wrenn is no different than any other person in that aspect. Life gives you NO promises. Everyday is a gift. I love the time I get with my kids and boy is it going to be nice to have them both under one roof.

Wrenn will go to Clinic twice a week. I’ll draw blood from her broviac to have her levels tested. She’ll go to the hospital twice a week for therapy to help her catch up developmentally. She will be watched like a hawk even though she’ll be at home. When the doctors feel her levels have evened out for the rejection medications and she has fully recovered from transplant surgery, she will be discharged and only return to Children’s every three months for her lung tests. We hope and pray that her visits will be short and simple.

On Tuesday night, Wrenn has a coming out party, which is sponsored by the transplant team. Every child who has received a lung transplant is invited. She will have to wear a mask but will get her picture taken with Santa and big brother will be there by her side. It is something I have dreamed about since last Christmas. I can’t tell you how excited we are to be attending. Words cannot describe how blessed we all feel. Thank you again for keeping our family in your prayers and supporting our family.

Wednesday, December 1, 2010

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 CafĂ© 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!

 

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