For those of you who don't know, I met Carm in February 2013, and we were married in September of that same year. This past January we were blessed with a beautiful, healthy baby girl who we named Madison Joy. Life was good, however we were unaware of the major changes and challenges that were coming.
On Tuesday April 21st, Carm underwent emergency surgery as result of a twisted bowel that had gone undiagnosed in an emergency room visit on Sunday April 19th. As a result, her entire small intestine had died, and the surgeons had no choice but to remove it entirely in order to save her life. The small intestine is where the body absorbs nutrients from the food and drink you take in - and without those nutrients, you die. The nutrients that your body needs can be given through IV however there are many potential complications with that, both short and long term, as well as significant loss of quality of life. Carm is facing life on IV without the ability to eat or drink anything ever again. Mentally, socially and physically this will offer many challenges not only for her but for our family moving forward as much of our society revolves around food, not just for sustenance but for enjoyment.
Post surgery, Carm spent 2 days in the ICU and on Friday April 24th was transferred to another hospital. As a result of restricted blood flow, her organs continued to die and she was not getting any better - in fact she seemed to be getting worse.
A second surgery was scheduled for Monday April 27th in order to see what could be done to help her, however there were no guarantees. The surgeon had to remove more of her intestines, as well as part of her colon and some of her arteries that had also begun to deteroriate and were negatively affecting blood supply to the area, causing the continued problems. On completion of surgery we did not know how she was going to react to the removal of further organs, and the additional trauma. The second surgery appears to have been successful, and along with removing all the dead and dying parts of her digestive system, the surgeon was able to connect some of the remaining blood vessels in order to re-establish blood supply and hopefully arrest the decay. He was also able to reconnect her stomach to her esophagus, which will (hopefully) allow her to at least drink small amounts of water for comfort. Along with that re-attachment a drainage tube was installed in her stomach. At some point over the next few days, a "permanent" IV port ('Hickman') will be installed around her collarbone to make the IV nutrition distribution more efficient, comfortable and less infection prone.
Following this most recent surgery, Carm is still in ICU and it is still unclear as to what exactly this will allow her to do as far as eating and drinking as everyone responds differently. Essentially, anything that she puts into her body orally will pass right through her in a matter of about 10-15 minutes once the drainage tube is removed, so eating would pose significant challenges and discomfort.
She has a very long road ahead of her in terms of recovery from the multiple major surgeries, adjusting to life on IV, and learning what she can and cannot do moving forward. She is expected to be in the hospital for several weeks and even once she is able to return home, her entire life has changed. Our life as a family has also changed as a result - with a three month old baby, we cannot avoid food in the house, and eventually she will have to learn to deal with the reality of preparing meals she will not get to eat. Our family outings will likely not include meals out, or dinner invitations to friends houses as these sorts of things often do. Her long-term health will likely be affected as TPN (IV nutrition) takes its toll on the body over time. Her physical activities will likely be limited as well as a result of being on IV 16+ hours/day. She has had to stop breastfeeding, and we are not sure we will be able to have any more children. Suffice it to say that our life will never be the same. We do not know what it will look like, but it will have many challenges for all of us in the days, weeks, months and years to come.
We are committed to working through these challenges together, and we have been blessed with an incredible network of support from family, church, and friends. Many many people have been praying for us throughout this ordeal. Praying for Carm for healing and strength as she grapples with this extremely tough situation, and praying for myself and Maddie, and the rest of our extended families as we rally around her and encourage her and are there for her.
People have offered support in many different ways, and for all of that, we are extremely grateful. From child-care and dog-sitting to providing food for those of us spending our days at the hospital, every bit of help and support is tremendously appreciated. Aside from the practical needs of running our household day-to-day, we will also have some financial needs as a result of this. There have also been people who have expressed a desire to help who are perhaps out of town, or unable to help in other tangible ways that might wish to contribute financially. We have no way of knowing yet what all the financial repurcussions of this will be, however things like housecleaning, child-care, medical supplies/items for around the house when Carm comes home from the hospital will all be in the mix. Any financial support will of course be appreciated and will certainly be put to good use as we figure out what our lives will look like moving forward.