Breaking News!

Joshua is finally home!

Since I’m so far behind in this blog, I’m going to catch everyone up in this one post. Monday 27 June the whole family went to Atlanta to see Joshua. We had to cycle everyone into the CICU one at a time and several times we had to leave or wait for 30 minutes due to admissions, folks returning from surgery, etc. It was a long day but well worth it. That night, Diane took the kids home while Michelle and I stayed at the Ronald McDonald House (what a great facility for families going through tough times…can’t say enough good about it). Tuesday morning (28 June), we went in for rounds and the doctor said that they may do surgery at the end of that week. By the afternoon, they had scheduled Joshua for surgery on Wednesday 29 June! We stayed at his bedside as much as possible that day. Talked with the surgeon that night about what they planned to do and the risks. He said that the success rate was roughly 95% for infants undergoing this procedure.

That night we stayed at the Ronald McDonald house again and went in for rounds in the morning. They wheeled Joshua into surgery around 1:00 PM (he was the second cardiac surgery of the day). Just as we got to the surgery waiting room, we got a call asking if we wanted to meet with the genetics counselor. We figured that it would be a good distraction for us while waiting for his surgery to finish (it was scheduled to be a 5 hour surgery). We found out that he has Down syndrome (Trisomy 21). The counselor gave us info about support groups and a clinic for Down syndrome. We went back to the waiting room and around 6:00 PM the surgeon came out to talk to us. The surgery had been a success; they were able to do a complete repair (instead of a BT Shunt) and he shouldn’t need another surgery for a few more years.

Stayed at the Ronald McDonald house again and went to rounds Thursday morning. The doctor said that Joshua was recovering very well (rated him an 8 out of 10). He recommended that we go home and spend time with our other children since Joshua would be sedated and on a ventilator for the next few days. Thursday afternoon we drove home and stayed until Sunday morning (3 July).

Saturday (2 July), the nurses said that Joshua would probably be moved to the step down unit on Sunday so we made a point of being there Sunday. On Sunday, we had a friend of a friend who is a therapeutic musician come and play the harp for Joshua. He seemed to enjoy it. Michelle and I really liked it as well…it was very calming for us (the staff appreciated it also!).

Sunday Joshua stayed in the CICU one more day. His morning chest x-ray was a little “wet” and the doctor wanted him to stay. Sunday night we stayed in the parent sleep pods at the hospital (tiny rooms with just two twin beds and a light). Monday (4 July) we went to rounds and found that they’d be moving him to the step down unit. They moved him around 11:00 AM.

In the step down unit, the parents are required to learn how to care for their cardiac children. There were classes we had to attend (car seat class, infant CPR, discharge class) as well as meetings with the different doctors and therapists. We also had to be on hand for 24 hours to prove that we could care for Joshua.

On Thursday (7 July) we were able to bring Joshua home. It feels great to have him home; however, it’s a lot of work. He’s still on an NG (nasogastric) feeding tube, so every three hours we give him 65 ml of breast milk. During the day we’re supposed to try to give him 5 ml via bottle and the rest via his tube. The tube is hooked up to a machine that looks like one you’d use to give an IV. It pushes the milk down the tube into his stomach at a certain measured rate. So every three hours we feed him and an hour after starting the feeding, we have to clean the bag/tube that we use with the machine (his feedings take an hour; we use the bag for 24 hours and then start the next day with a fresh one). He’s also on two medications that we have to give through the tube.

All the children are happy to have Joshua home. They are very interested in him and very affectionate. We have a ton of doctors’ appointments to go to for the next few weeks. It is sometimes very overwhelming, but we trust that God will give us the strength and grace that we need.

Enough ramblings for now…it’s almost time to feed Joshua again. I’ll try to post more regular updates and include pictures soon.