BEN, AFTER 2ND SURGERY
6/25/98 - Finally, after 2 weeks of crying following surgery, we get a smile!!
6/25/98 - Ben
7/29/98 - 4 1/2 months old
We are going on three weeks without having to be in the hospital, at the clinic or on the phone with Benjamin's pediatrician or cardiologist!! This is a real blessing after we struggled through the month of June.
With the heart cath, heart failure, the Glenn procedure, and 2-3 weeks of constant crying, there were only three days the entire month we weren't in contact with someone at the hospital or clinic. June was by far the toughest month for us since Ben was born. We were re-hospitalized after he went home for the Glenn due to his uncontrollable crying. We were given several possible reasons for the crying, although nothing definite. After a month on phenobarb, a drug often used to control seizures (which Ben did not have), Ben seems to be coming around. He is now off all medications except digoxin, which is the drug used to make his heart beat stronger, but slower. Ben's next appointment is 8/7/98, and if all goes well, we won't have to go back for THREE MONTHS!!!!!!
Ben is really developing well. He's eating good, gaining weight and smiling all the time. Just last week he began to reach for his toys, and yesterday I caught him holding onto his toes and staring at them like they were the neatest thing he'd ever seen! He also slept through the night for the first time last night, at least the first time that was not drug induced.
We marvel at the blessing God has given us, and treasure every day we have with him, not knowing or thinking about what the future holds. No one is guaranteed tomorrow, so we must live for today!
08/11/98 - 5 months old
Benjamin had a wonderful checkup last week! His sats were holding at 82%, his coarctation (narrowing) of the aorta has remained open and does not currently require surgery, and he weighed in at a hefty 12lbs. 10ozs! We do not need to return for another checkup for two full months!
09/20/98 - 6 1/2 months old
Well, we didn't make it our two months between visits. Last Wednesday (9/17/98), Ben started making grunting noises when he was crying. He has been very whiny the last month or so, but we thought it might be his teeth coming in. After his grunting spell, he fell asleep for a few minutes. When he awoke, we saw that very familiar blank stare. It was the same stare he gave us in June when he was in heart failure. No clapping, finger snapping, or yelling would cause him to react. We rushed him to the E.R. at Children's Hospital.
As the night went on, the doctor on call decided it might be more abdominal related, because Ben became very upset when the doctor pushed around his abdomen. The chest xray came back, and it did not appear that Ben's heart was any larger (a key sign of heart failure.) We were admitted for the night.
In the morning, Dr. Cabalka had an echo done, and it clearly showed that Ben's aorta was again narrowed. It was about 10mm above and below the narrowing, but just 2-3mm wide at the narrowing.
Our cardiologist is out of town, but will be back in time for surgery, which is scheduled for Wednesday, 9/23, at 10am. Although there still may be something wrong in his abdomen area, we need to fix the aorta first. If his sensitivity in this area continues, we will pursue it further.