Our post transplant life has begun and we have quickly discovered what they said is true— there are many bumps in the road. We spent a lovely, stress free (LOL) week and a half at home trying to settle into our new routine (medicine, monitoring vitals, constantly encouraging Hollis to eat and drink, medicine, driving back and forth to the hospital for lab draws, and more medicine). As fun as this sounds, that week and a half at home was the highlight of the last month. We finally got all of the dreaded dressings and bandages off after lots of battles and tears. If you have a child who has been hospitalized you can relate to the very real trauma around removing anything sticky from the body—it’s total torture.

We loved seeing some friends outside and Hollis’s drive by birthday party was a huge success. We even had the police come by with their sirens going and some firefighters join us in their truck! Hollis started getting around the house easier and acting more like her old self. She was so happy driving her police car around the neighborhood! But all of this is again on pause…

On Sunday afternoon Hollis started complaining of right shoulder pain and spiked a fever shortly after. A fever in a post transplant patient is always a reason for an emergency room visit and a full workup. After Xrays, a CT scan, lots of bloodwork and pokes we found out that Hollis had fluid built up in her abdomen and also in her lung. This is apparently a common post transplant complication, but does require a hospital stay for an undefined amount of time. So, back to the floor we went and have been since. Hollis’s surgeon decided the best plan for treatment would be to go in surgically through her previous incision to drain the fluid collection in her belly and place a chest tube for draining the fluid in the lung. This meant yet again another surgery (4 trips to the OR since 4/28) and more tubes and drains. Needless to say, this has all been extremely challenging mentally due to everything we have gone through. So now we wait and stay in the hospital while she gets IV antibiotics and we monitor the lung and abdominal drainage. She will have to keep the chest tube in until the team is sure the fluid will not come back which is very difficult to predict timing wise. Chest tubes are not comfortable and Hollis is again struggling with eating and drinking so please pray this all resolves soon and we can get back home and try to resettle.

One of Hollis’s sweet nurses said to us during our previous hospital stay that she loved having liver transplant patients because she gets to know them so well over the first year as they usually have multiple hospital stays. She said it with such kindness but it broke my heart to hear. The common phrase that keeps being repeated is the first year after transplant is an always a bumpy road. So far, it feels like a roller coaster that I just want to get off of. I pray as we get further out we begin to experience that flat road that everyone keeps saying will come one day. 

None of this has been easy or ever will be easy but we are getting through it thanks to all of you. We are so grateful for the people who have truly shown up for our family over the last months. Every single meal, text, donation, kind word is seen and although our brains have been too overwhelmed and overcrowded by stress to individually thank you all, please know it is greatly appreciated and we love you.

Please pray we get over this bump in the road soon - your prayers have gotten us through the unthinkable before and we believe they will continue to!