Madelyn, our first blessing from God, is incredible. She has a kind, tender heart and a beautiful smile that warms this Mommy's heart. Here is our family’s journey of Madelyn’s health, it’s long and I have never written it out before. Here goes...
Madelyn is almost 6 and our story with Children's Hospital Colorado began two weeks after she turned one, on Friday, June 5 at about 7:30pm. Madelyn vomited quite a bit of blood and we went to our local hospital. I was home with Madelyn while my husband was helping move our new pastor and his family into their home. I called my husband and he said he would be right here, thinking I was wrong and that Madelyn had not vomited blood and it was something she ate or something. An acquaintance at the time, Matt Nowland (a family practice doctor and now a close friend who is riding the Courage Classic with us too) was helping move our pastor in and Collin asked him come over and ease my fears. When they arrived, they both knew it was blood and we needed to get to the hospital...I had no idea what vomiting blood meant but wasn't too wound up yet. At the hospital, the staff asked about what she had eaten, been exposed to, ran blood work and x-rays and it felt like it took forever...nothing showed up in the x-Ray but her blood work showed her hematocrit was very low so they started a blood transfusion and were sending her to Children's Hospital Colorado via life flight helicopter. I'm starting to panic now and asked if I could ride, assuming I could. I was told they would ask, when the flight crew arrived to our small town (they were 120 miles from us), I was told I couldn't go since Madelyn was receiving a blood transfusion and they needed two people attending to her. The gentlemen on the flight crew were wonderful, they told us about their daughters and that they would take care of our Madelyn. One of them even got my cell number and updated me, what a blessing they were! Collin had gathered a change of clothes from home for us, as it was close to 11pm by now and we knew we would need clothes for the next day. So, we loaded Madelyn in the helicopter and were right behind her, in our vehicle. A friend had been traveling back from California and his flights were delayed all day...putting him leaving Denver about the time we had to put Madelyn on the helicopter...so he went to Children's to meet Madelyn off the helicopter and held her until we got there. It didn't take us too long to make the trip, normally 2-2 1/2 hours, but it was the longest 1 hour, 45 minutes. Once we arrived, Madelyn was upset and we held her in the er...got more x-rays and waited to find out what the next step was. She was admitted soon and we were moved to a patient room on the 9th floor with a lot of flurry and people (nurses, med students, fellows, lab techs and more) in and out of the room until sometime between 3 and 4am. Lots of questions, telling everyone what had happened and learning it would be morning before we would know more.
During all of this, we had some incredible people praying for us and loving us and sharing their experiences through this all. Friends went to our home after we left the ER for Children’s and cleaned up where Madelyn had gotten sick. Our parents were ready to make the trip from Texas but we didn’t think it was necessary until we made it to Children’s and started learning it was a bigger issue than we imagined. By morning (6am or so), we knew we wanted our parents with us. So, my Mom found a flight (Dad stayed with two of my younger siblings, still in school at the time) and Collin’s parents loaded up and started the 1000 mile drive.
Madelyn had another blood transfusion on that Saturday morning and mid-morning we knew she would have an upper endoscopy to see what was going on as x-rays were still not showing anything. Our new pastor came to see us at Children’s and kept us company while we waited for the procedure, what a blessing as we had no idea what to think or do so we chatted with our new pastor and held our baby girl. I held and rocked Madelyn as we were in the procedure area waiting for the staff and then they carried her away for the procedure. The endoscopy felt like it took forever and my Mom arrived from the airport right as Dr. Kramer was sharing his findings. Dr. Kramer found three varices that needed banding and that was where the bleeding was coming from. Now that he stopped the bleeding, he could work to find what caused the varices. Madelyn had medicine to take and ended up with more x-rays as her oxygen levels dropped in the night, due to her swollen esophagus. Collin’s parents arrived in the middle of the night saturday night. Side note: Dr. Kramer was on call that weekend for the Digestive Health Institute. Dr. Kramer is an incredible physician and we have been blessed that he has followed Madelyn for the last five years. God has a plan, always!
Up next were ultrasounds, cat scans, MRIs and continuous blood work as well as monitoring all input and output from Madelyn. This took several more days to get complete family medical histories (thankful our parents were there!), run a test, get results, doctors consult, share information with us and decide what test to run next. Hematology was brought in and we continue to follow-up with them as well, clinic visits and monitoring Madelyn’s blood work. We grew accustomed to this teaching hospital and were so thankful we could hold our girl, some parents on the same floor could not do that with their children.
Finally, the DHI physicians concluded that Madelyn had deep vein thrombosis, portal vein (a blood clot in her portal vein, the port to her liver) that had dissipated as it is not seen on scans or a malformation of the port itself (this cannot be confirmed without invasive surgery), causing portal vein hypertension, an enlarged spleen and esophageal varices. The varices are blood vessels that line her esophagus and a result of too much pressure in those veins (they are not made to handle the ‘back up’ pressure they are getting due to the portal vein hypertension and deep vein thrombosis) so they burst into her esophagus, blood ends up in her stomach and it either comes up or goes out in a bowel movement. The ‘banding’, if necessary, is literally that; a band is put around the bulging vein and it cuts that vein off and her blood finds another route. Eventually this will allow the blood ways to re-route itself around her body; however, this is also why Madelyn is now a life-long DHI/GI patient. She will always have endoscopy procedures to see what is actually happening, we pray the procedures continue to be spread out and they will as long as her body is working to re-route her blood and no banding is needed each time.
So, we were dismissed with our girl. Madelyn’s personality changed in those six days, forever. She was poked and proded too much and didn’t want anyone in her room when it was over. She signed and constantly told us ‘all done’ when someone new came into the room. It was heart-breaking to see her change but we were sleep deprived and running on adrenaline, we had no idea what was happening right before our eyes until we could step back weeks later and notice it.
Leaving was hard...Children’s Hospital Colorado had become our security blanket and we longed to feel the security of the staff as we were driving back to our home. However, I must note that we were so grateful to be able to leave with our daughter, we were mindful of that when we left before some other patients on the same floor, some of whom had been there longer than we had been. Collin’s mom came to stay with us for a few days to help us get back into a routine. I was already a stay at home mom and so thankful that I was. Our summer became quite boring...we didn’t go many places and I held Madelyn a lot! Somedays, that’s all I did and Collin and I were ok with that. Madelyn and I did take a Parent/Toddler swim class and enjoyed it. The next three weeks flew by as we had to go back for a follow-up procedure in July, just one month after her first endoscopy. My parents came for the procedure and we were set to stay in-patient for a night or two after the procedure so Madelyn’s oxygen levels and more could be monitored. More varices were banded and we were to follow-up again in a month.
So, we went back to Children’s Hospital Colorado in August, banded more varices and then followed-up again in September for another endoscopy. This time Dr. Kramer decided to lengthen the procedures to 3 months, praise God! We went back in December for Madelyn’s 5th endoscopy since we began this journey just 6 months before then.
We went another three months and followed-up in March 2010, then again in June 2010 and again in September and December. Then we got a 6 month break! June 2011 brought us back to a three month span as there were some varices. September 2011 was another procedure and then another bleeding episode afterwards. This scared us, again, so we rushed to the ER again and were sent back to Children’s Hospital Colorado. This time it was in our own car and I had girlfriends that were in Denver on a fun trip that met us and waited in the Children’s ER with us. We followed-up in December 2011 again after the bleeding episode and all was looking good again.
We then went 6 months to June 2012 and we were given a year!!!!! One year between procedures...wow! We were thrilled, June 2013 came and we got another year. That leads us to now, June 2014 we have another endoscopy scheduled for Madelyn. Madelyn and our whole family will deal with this forever. Madelyn takes medicine, daily, to keep the acid levels in her esophagus down, thus keeping the risk of varices bursting lower. Her spleen will always be enlarged and at risk of rupture. She has a slightly compromised immune system and always will. Through all of this, God has blessed us immensely. We bring our daughter home after procedures and only go for clinic visits in between procedures for now. What we have gone through with Madelyn has allowed us to have compassion for others, no matter the ‘level’ of illness, it’s your child. God has also given us the opportunity to minister to others and for that, we are grateful. It’s incredible to be able to share some of the ‘tips and tricks’ we have learned over the years that make procedures and hospital stays a little easier.
And that brings us to the last FIVE years of Madelyn’s health. God’s grace has been with us, always and I am grateful.
- Meredith
