By the time we got home on Thursday night Cora was tired from the long day and so was I. During the night she was more restless than usual and I just figured it was because of the six hour drive and the doctors visit.
Friday morning she was awake at her usual time but really had no interest in eating. Odd, I thought. An hour later I tried again to feed her and she drank her full serving of formula and then within five minutes vomited it all back up. I started to get worried but she didn't have a fever so I just assumed that her increasingly fussy mood was because of teething.
Unfortunately as the day wore on she became worse. Cora was crying most of the time and twisting from one side to the other if you laid her down. Her most comfortable and least fussy position was being held upright against my shoulder with me patting her back. By 4pm I was very worried and called her pediatrician. The doctor said that it was probably just a "bug" but if she got worse to call her.
Saturday morning had me on the phone with the Doctor again. Cora hadn't slept much, was very fussy, still had no fever but was breathing with retractions. A retraction in breathing is seen when Cora's chest works really hard at breathing and her tummy is used to pull air into her lungs. For Cora to be fussy was highly unusual. She is a happy, contented baby and seldom cries. By Saturday afternoon I had Cora in the emergency room in St. Ignace. The ER team evaluated her and called the children's hospital in Ann Arbor and they were instructed to give her an additional dose of lasix. Because Cora would still smile at people randomly, and stop crying when in my arms, and had normal blood work, it was felt that there was no immediate danger for her. Simply said, they didn't know what was wrong but she was stable.
Sunday had the doctor and I making phone calls back and forth to each other to keep track of Cora's condition. Her breathing at this point was at 80 - 90 breathes a minute but she was tolerating food when I could get her to eat. We were seen by the doctor first thing on Monday morning and with another call to Ann Arbor Cora was sent to Petoskey for another echo cardiogram. Once the result were in I was back home in Pickford with Cora. It was then that I was told I needed to take Cora to Ann Arbor and that the pediatric cardiology fellow was waiting for her.
I loaded her up and away we went. I drove with my flashers on and drove fast (not telling my speed) the whole way. We past several cop cars on the way and no one seemed to see us or give any intention of stopping us. This was one time I would not have minded being assisted by a fellow police officer, maybe even having a police escort?! I prayed the whole way and tried to not think of anything terrible happening to Cora.
Once in Ann Arbor Cora was evaluated and made stable with medicines. It was determined that her heart repair had a "partial dihist" and the regurge from her tri-cuspid valve was actually worse than before the operation. This happens sometimes, and yes, I knew it was a chance with this kind of open heart surgery. You are given a choice before the surgery, you are told the percentage of success and what can go wrong. I remember Dr. Bove asking me if I still wanted Cora to have the surgery. I remember telling him, "If she doesn't have the surgery, she will continue to get sicker and die. So there really isn't a choice is there?" and he replied, "I guess not when you look at it like that." This was no one's fault. It just happened. Unfortunately Cora was suffering because of it.
Cora was admitted for a week and stabilized on more medicine. It was decided that she would take the medicine as long as possible to get her bigger and stronger before another operation was done. The hope was that she could get another year under her before she needed the next operation. I went home with 4 different medicines. She takes four in the morning, one in the afternoon, and four at bedtime. She is also feeding through a NG Tube due to not having enough strength to bottle feed for the whole four ounces.
She is a trooper, this little girl can fight with the best of them.
After being home for two weeks she was again seen by her doctors and they all agreed that her operation cannot wait any longer. Cora struggles to keep on her weight, she struggles to finish even an ounce of formula now and the rest is fed through the NG Tube. She is again sleeping more than awake. Her hand and feet are starting to swell from water retention (despite being on two diuretics) and she doesn't have much playing energy. Although she can still do raspberries!
Don't let her fool you! Look away and she is strong enough to pull that whole NG Tube out of her nose and play with it in her hands. And she looks very pleased when you discover that she has again succeeded in pulling it out. She does not, however, like my putting the tube back in!
At this point her next surgery date has been set and is quickly approaching. I am scared, relieved, terrified and joyful. Scared because I know what all will happen to Cora and relieved to see the end result that we had before the "dihist of wound" found her. I long to see that energized Cora Jean again.
Just another step on this journey Cora has decided she and I must travel together....
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