What a difference 36 hours can make. Here is a picture of Z’s face yesterday:
Do you see any spunk or joy in that face? Do you see any color in that face? Nope. Me either. Yesterday was easily one of the hardest days yet. Each day in the PICU brought a new challenge, but we were getting better. Each day they told us we would be going back to the ward the next day. Friday was a rough day with pain management. I thought it seemed like Z’s tummy was distending a bit, but I tend to lean toward doom and gloom. I figured I was imagining things. Friday night was not fun. He was asking for more pain meds almost as soon as he got a new dose. By Saturday morning, everyone saw the distention. Nobody liked the distention. X-rays were taken. Distention was seen. Predictions were made.
The doctors felt that Z might have another ileus or another obstruction or an infection or the beginnings of an abscess. He was taken back off liquids. There was talk of reinserting the dreaded NG tube. His surgeon, who was in Colorado, called to talk to us as well. To say we were discouraged would be an understatement, but I can’t think of any other descriptive words that would fit better. Our “replacement” surgeon said that they were taking things very seriously and that they would get a handle on things. In the meantime, we were to walk Z as often as we could.
You may think going for a walk would be easy. You would be wrong. Zack’s stomach was in a lot of pain. The first walk involved lots of crying and pain and he made it 5 steps out and then Jim carried him around the PICU ward, 5 more steps back to bed and then needed more pain meds. The doctors decided it was time to go on a low and continuous dose of Dilaudid with a PCA button (Patient-controlled analgesia). Jim kept telling Zack that the more he walked, the sooner he could come home. We kept telling him how brave he was and how strong he was and how proud we were. It seemed as though he was beginning to feel better by the end of the day. Another x-ray confirmed the distention was subsiding. It also showed a matchbox car…it seems his bed was not completely cleared before the x-ray was taken. I’d love to have a copy of that!
It was a long day and Zack fell asleep at 7:00. It was Jim’s turn to spend the night and he thought it was going to be great. Sadly, Z woke up every two hours overnight but woke bright and chipper. All of the testing the doctors did the previous day came back negative. Zack’s fever was gone. He was able to walk all the way to the nurses station (12 steps?) and back to his bed without complaint. The combination of continuous Dilaudid, subsiding distention and prayer made all the difference. In addition, Zack’s morning labs showed a decrease in white blood cells and stabilizing numbers in other areas. After a call to the ward to see if they could handle Z’s extra meds and challenges, the decision was made to release him back to the ward! Yipee! After 5 1/2 days in the PICU we are back to the regular pediatric ward!
Did I mention how much we love our nurses here? They made such a fuss over Zack’s return.
He was so excited to be back. He has been a chatty little boy and much more like himself. The difference is incredible! We’ve been walking in the ward, playing in the playroom a bit and writing thank you notes.
Getting ready to walk in my new Superman cape my brother Jake gave me. I am pretty strong and brave.
Check me out!
When I get tired, my ride is right there to take me back to my room.
Another exciting development tonight…we got rid of Zack’s second IV port in his left hand. Slowly shedding equipment and medicines. It’s pretty awesome.
Now that we are back on the ward, we still have a ways to go. The doctors have all said that in order to go home Zack has to be able to walk, eat, drink and take medicine orally. We are well on our way to walking. Still not allowed to eat or drink. Tomorrow we will be able to introduce very limited liquids. Since we had such a problem with distention after introducing small amounts of gatorade, we will be going extremely slow this time. We don’t know what that will look like, but it will take a couple of days before we are eating anything. Then, or maybe at the same time, we have to wean off Dilaudid and get onto oral pain meds.
Jim and I are hesitant to guess when we will be coming home. It seems like we get our hopes up and then have a set back. However, today was a good day. Zack smiled. Zack walked. Zack played. We will count our blessings and give thanks for that! Thank you for your prayers and well wishes.