Sunday, October 14, 2007
October 14th, 2007
Sorry it's been a while since I posted last. We made it back to Wichita safely. We celebrated 4 birthday's today. Hayden turned 2 on September 21st, Kirsten turned 18 on September 26th, Harrison turned 10 on October 2nd, and Bob turned 32 today! Wow, did we have a lot of cake! The cake was fun. Bob had a golf theme, Harrison had a football theme, Hayden had a Madagascar theme, and Kirsten had a Pirates of the Caribbean theme. The kids were such troopers waiting to celebrate their birthdays. We are blessed with very patient and understanding children. They really care about Kinnick and Carver and were happy to wait knowing this is what it takes to get their Brother and Sister home ASAP.
I met the ICU Pediatrician, Dr. Lindy Smith. I really liked him. He listens and acted immediately. Things are moving very quickly. An ENT (Dr. Harris) was in to see Kinnick Thursday evening. He confirmed that there is no block in her nose and the left vocal cord does not appear to function as well as the right vocal cord (meaning possible paralysis of the left vocal cord - this can repair over time). A surgeon also came in Thursday evening to evaluate Kinnick for a G-tube. An upper GI was scheduled and done on Friday to evaluate for G-tube placement. During the upper GI procedure, it was discovered that Kinnick suffers from significant acid reflux. The acid is causing inflammation of the esophagus which could be causing some of her breathing problems. Kinnick is scheduled for surgery at 7:30am CST tomorrow morning. She will get a G-tube and a stomach wrap procedure that will keep her from having the acid reflux problems. I am told that this should make a difference in her breathing within 2 weeks. While she is sedated, Dr. Harris (ENT) will come in and do a little more extensive research on her throat to see if there is any other obstruction besides the inflammation caused by the acid reflux. He will confirm whether or not scar tissue from the PDA ligation is causing an obstruction and the partial paralysis that we are seeing with her left vocal cord. I am told that the surgery combined with the add'l scope procedure could take 2 1/2 - 3 hrs to complete. Kinnick will be put on the the ventilator for the procedures. I'm told to expect her to be on the ventilator at least 3 days. The recovery is very painful. She will be sedated and will be given pain medication for at least 3 days. I was also told to expect a lot of swelling - similar to what we seen with her NEC surgery (intestines). This is going to be really hard for us. Kinnick has been doing so good lately. It will be hard to see a set back like this. However, this is the last step before Kinnick is ready to go home. In addition to all of this, they switched Kinnick from the high flow cannula to a low flow cannula. She seems to be much happier not having all of the high flow air blowing up her nose. To do this, they put her on 100% oxygen (same thing she will go home on) and just adjust flow as necessary. She has been on 1/4 - 1/2 lt flow.
Carver was also seen by a surgeon on Thursday. Nothing significant - he is just needing a circumcision. They wait to do this procedure until shortly before they go home. This procedure will be done early this week at the bedside with sedation. A nutritionist came to see Carver yesterday and added add'l fat to Carver's formula. They don't feel like he is gaining enough weight. Since we already have a hard time getting a minimum volume in him, it won't do any good adding add'l food. So, instead they're adding extra fat to the formula to increase calories. They have also put Carver on acid reflux meds. He spits up quite a bit a couple of times a day. They believe this is because of acid reflux. They have also started Carver on a diuretic drug. They believe between the diuretics and the acid reflux meds, his breathing will also improve. Carver was on diuretics when we went to Detroit. The Doctor's in Detroit cancelled his diuretics because they thought they were keeping him from gaining weight. We didn't see a significant difference in his breathing or his weight when the drugs were discontinued. We'll see what happens this time. Carver was also moved to a low flow cannula. He is on 100% oxygen at about 1/8 lt flow. We will see a different ENT tomorrow at 11:30am CST to start looking into Carver's hearing needs.
I am told that both babies should be home before the end of the month. They could be home in as little as 7-10 days.
Please pray that Kinnick will have the strength to recover quickly from this surgery. Please also pray for the Doctors and Nurses that will be caring for her. Please pray for the strength that Bob and I will need to make it through these last steps before taking the babies home.