praying for luke: May 2013

Luke’s third open heart surgery was already over two months ago. I tried to keep everybody in the loop by short posts on Facebook, but I know some of you aren’t on Facebook, and I haven’t written a post that puts everything together. And I figure I’d better get it all down for posterity before Mr. Samuel (our second son) makes his appearance into this world.

Luke had his Fontan surgery on March 6th this year. The day before, we went to Medical City for his pre-op appointment and to consult with his surgeon. Luke was very excited about getting an X-ray (he’s been saying “X is for X-ray” since he learned his alphabet) until he realized it involved a big scary machine in a cold room where Mamma couldn’t go. We got through the X-ray and blood work, although both were pretty upsetting for him. Before all that though, he got to play with the Child Life Specialist in a mock OR. His favorite part was playing with the labels of the body parts on the picture of the child in the Child Life Room. He adores anything that has to do with words and letters. Meeting with Dr. Mendeloff made us feel as confident as we could feel the day before heart surgery, and we knew we would be in great hands.

The surgery seemed to take a long time, but it probably wasn’t any longer than a usual Fontan, I’m guessing. Surgery went very smoothly with no problems. We got to see him briefly in the hallway when they were taking him from the OR to his CHSU room. Then things really seemed to take forever before we could go back and see him. When one of our favorite nurses, Mary-Catherine came to get us to go see Luke, we found we had already overcome a major hurdle: Luke was already off the breathing machine! After the complications we had extubating him after his heart cath a month before, we were very worried that Luke would have major trouble again getting off the ventilator.

Weaning him off the nitric oxide and oxygen proved to be our first problem. The first time we tried to wean him off the nitric, his o2 sats dropped dramatically and his heart rate increased. Night four post-op was a little scary for us. It was hurting Luke to cough so much that he refused to do it and wouldn’t clear secretions. His sats went down into the 30s and the RT had to suction secretions out through his nose, which was pretty traumatic for him. It certainly wasn’t the worst emergency we’ve had in Luke’s history, but it was a pretty tough night. We waited another day or so and then tried again, this time much more slowly and with the added help of a drug that does the job of the nitric. We were successful this time.

A big challenge for Luke was getting him out of bed and walking around. He really didn’t feel up to doing anything but laying in bed and watching Super Why. He cried every time we got him out of bed, but eventually he was walking all the way down the hall multiple times a day. Once we got him off the Nitric, we were able to take him on wagon rides all over the hospital. He enjoyed that a lot, and it gave us something to do other than sit around in his room.

The single biggest problem we had with this surgery, immediately afterward and in the several weeks following was Luke’s fluid balance. Fluid imbalance can affect Luke’s blood pressure, heart rate, and o2 sats by making it harder to breathe. A few days after the docs had removed both of Luke’s chest drainage tubes, his x-ray showed that Luke was collecting fluid around his right lung. At his bedside, they put in a “pig-tail” which is a mini-drainage tube and he immediately drained over 100ml of fluid. Things started happening very quickly then. The day after they put in his pig-tail, it stopped yielding fluid, so they took it out. They weaned him completely off of supplemental oxygen in one morning. That afternoon we were able to move him out of ICU to the regular patient floor.

Luke’s labs were not good the next morning. His BUN (a number that measures kidney function) was very high. This was caused by being overly “dry” on his body’s fluid balance. Dr. Kao told us that we would hold his diuretics and add water and Pediasure to his daily intake, but we wouldn’t be able to go home until Luke’s BUN was in a more acceptable range. Luke was not sleeping very well at all the whole time he was in the hospital. He would wake up every 15-90 minutes and be incredibly grouchy. Consequently, both David and I were also sleep deprived. We were sorely disappointed in Luke’s BUN because we desperately wanted to take him home. Dr. Kao said that taking him home with a PICC line and bringing him back every day to draw labs was not an option. So we settled in for a few days. Thankfully, David’s mom stayed with us the whole time, so we had some relief.

After a lot of prayer from us and all of you, we found out on March 18 that Luke’s BUN had decreased to a much more normal number. It still wasn’t “normal,” but it was at a level acceptable enough to take him home. It was such a relief to all be under our own roof again.

Luke’s recovery seemed so slow to me. We also had quite a bit of back and forth--getting better, then getting worse again. It was all fluid related. We got home on a Monday and things seemed to be improving, although he still wasn’t sleeping well, waking up at least every two hours. By Friday, Luke’s breathing was really labored and fast and his sats were lower. We took him to Medical City Friday morning for an X-ray, then we saw one of his pulmonologists (Dr. Gelfand) and Dr. Kao (cardiologist) immediately Dr. Gelfand talked to her. Dr. Gelfand said his x-ray didn’t look great. Dr. Kao sent us to get labs drawn to find out what was going on with his fluid levels. We were afraid that Luke would have to be admitted to the hospital, but we ended up going home and putting Luke back on oral Lasix (diuretic) and prednisone (steroid) to help him breathe better. Things started to improve.

That Saturday night though, we had another adventure. David discovered at bath time that Luke’s scrotum was very swollen. This was somewhat alarming, but we weren’t really sure which doctor to call. David ended up calling the pediatrician’s office and the nurse on call told us to take him to the ER. We weren’t expecting that, but we packed up and got to Medical City about 9:00. It was definitely not the longest stay in the ER we’ve had, but exhausting all the same. At the end of it, the ER doc diagnosed Luke with something called Acute Hydrocele. He suggested we consult with a general surgeon on Monday to see if he would need surgery to correct it. David and I were completely frustrated at the prospect of Luke undergoing yet another surgery.

Sunday, Luke’s problem was better, and we decided that I would talk to Dr. Kao before I called the general surgeon. Dr. Kao said that she suspected that since he’s never had this problem before, it was probably due to the fluid imbalance and we should wait to see if it resolved or recurred before we called the general surgeon. It did happen one more time within the next couple of days, but it hasn’t happened since then, so we don’t feel like we need to do anything about it unless the problem returns.

Over the next several weeks, we continued to have fluid problems. On Lasix, Luke’s BUN would get really high, but when we would hold it, Luke would become very swollen. Instead of accumulating in his chest, the fluid started accumulating in his legs and feet. It got so bad that it got very painful for Luke to walk around, or even for us to touch his legs or feet gently. This made things like getting Luke dressed and ready for the day or getting him in and out of a shopping cart extremely difficult. Luke would scream anytime his feet touched the floor or I had to hold onto his legs to change his diaper. It really was hard carrying around a 36 lb boy on sternal precautions (can’t lift him by his arms) while I was more than 30 weeks pregnant. But God gave me grace for each moment and we got through it.

So we were in a bind: Luke needed Lasix to get the fluid off so he could walk without tremendous pain. But every time we gave him Lasix, his BUN would get worse. And he still wasn’t sleeping well. Finally, we seemed to find a cocktail that started moving us in the right direction: Lasix every other day, lots of walking and tricycle riding (in spite of his pain) to work out the fluid in his legs and feet, and a healthy dose of Melatonin at bedtime to help him sleep. Luke started sleeping better, which helped him to be less grouchy during the day and more amenable to walking. The every other day Lasix helped get the fluid off slowly enough to keep his BUN going in the right direction, although it was very slow progress. Finally, toward the end of April, seven weeks after surgery, we got a call from Dr. Kao who said that his latest labs looked “beautiful.” It was almost like he flipped a switch. The difference between that Sunday and Monday was night and day. He visibly felt a lot better and had a lot more energy. Walking didn’t seem to bother him nearly as badly.

Now Luke is back to his old self. He’s sleeping through the night, without the help of Melatonin, with very occasional and brief waking in the night. He’s walking all over the place and regaining his skills in Physical/Occupational/Feeding therapies throughout the week. Last week we hit a major milestone in our family’s life: we weaned off of home health nursing. Our nurse’s last shift was last Thursday, and we’re not looking back. I was nervous that I would regret dismissing our nursing, but it feels so good to have our home all to ourselves for the first time in nearly four years. Luke misses his three nurses every day, but we are so excited that we get to be a “normal” family finally.

We visited Dr. Kao this past week. She is thrilled at his progress. She reduced his Lasix to every other day, and we’ll probably end up discontinuing it very soon. We haven’t had to draw Luke’s labs since April 22. He’s been feeling so well that we haven’t needed to wonder or worry about what his numbers might be. Surgery and recovery has definitely made a lasting impact on Luke, though. Many times when we get in the car, Luke says “no ouch!” meaning that he thinks I’m taking him to get his labs drawn. Every single time he says this, it breaks my heart remembering how scary all of those draws must have been for him. I hate that it took so long to get his fluid in balance, but I’m very glad we have the “real Luke” back.

Luke’s full recovery could not have come at a better time (well, I would have taken it a little sooner). Luke’s little brother is coming tomorrow, so we’ve had a couple of weeks to settle into a rhythm without home health nursing. It’s hard to tell how much Luke understands about getting a new brother. He knows that his name is Sam, that he’s in my “belly button”, and that he’s coming tomorrow. Still, this is going to rock his little world.

We’re so thankful for everyone’s prayers through Luke’s surgery and recovery. It’s been such a long road, but we’re so grateful that all the major surgeries are behind us now. We continue to ask for your prayers as we bring Sam home in just a few days and begin to make the adjustment from a family of three with a sick little boy to a family of four with two healthy energetic boys. I’m so excited about our future, and so thrilled that you all have and will continue to be on this journey with us.

Blessings,

Rachael, David, Luke, and Sam (soon)