However as we were slowly discovering, HLHS is a maze of complications and just when you think you are taking a step forward, you take two steps back.
As we observed and spent more time with Krisha we noticed that she had a tendency to throw her head back at an angle when she was lying down. Initially we did not make much of it, until one day one of the doctors said that they suspected she had a high muscle and trunkal tone. They had been observing her carefully and since her brain scans had shown some white patches they were worried. Her surgeon had also been informed about it. The fact that these discussions had been taking place for a while since it was brought to us, we realised it had to be something serious.
What it meant in a nutshell that was the coordination between the brain and muscles was affected, which could lead to stiffness and affect her movements - ability to sit stand, hand feet coordination etc. The fact that the external signs had become visible so early was not good. I remember again moving into my protective shell and thinking that it couldn't be that bad! It was only when I had a meeting with the physiotherapist that I broke down. THIS WAS NOT FAIR! My little baby had been giving everything her best shot and doing so well and now this could not be happening to her!
As we explored further we got to know that the intensity of the condition could vary as she grew up, but her joints would be stiff making her movements clumsy - trying to turn she would just topple over and so on. Here we were just waiting to take her home finally and this changed the whole spectrum. Over the next few days as we grappled with the information, her heart condition seemed to pale in comparison. As if being a heart patient throughout her life wasn’t enough - our biggest fear seemed to be coming to life. Her head circumference was also not increasing as expected in babies which was worrying though not unexpected as her overall growth had been slow for obvious reasons.
The physiotherapist showed us exercises to do with her and since it was also visible that she tended to keep her hands folded into a fist and her thumb was always folded inwards, she was given a hand brace to be worn every two hours. All of a sudden we were meeting with physiotherapist, occupational and speech therapists.
An MRI was the only way to now determine the extent of damage to the brain, however it could tell us which parts of the brain were affected but not the extent of damage. So we might know her hand and feet movement was impacted but not how much. And in any case brain cells once damaged cannot be restored, so effectively there was nothing much that could be done. Plus an MRI itself is not an easy procedure to do on small babies as the patient is required to be absolutely still and giving her anaesthesia at this stage was probably not a good idea.
We were getting so grappled by all this new turn of events and it seemed so important to know more of what we were dealing with, however talking to the head surgeon gave us a better perspective on things. His take was that Krisha had gone through a very tough and traumatic two months in the hospital and although the situation was serious, from his experience such babies change dramatically once they are in the home environment with family. We had some time till the next surgery and till then we should focus on getting her home and give her time to stabilize and recover and simultaneously observe her development. We should give her this time unconditionally. So we decided to do exactly that and the MRI was called off.
Over the next few days that I spent more time with her, however she seemed to show good results. With the hand brace her thumb seemed to be opening up a bit. Her head was thrown back in certain positions and not all the time which was also a good sign. Flash cards were placed in her crib and she looked at them. She could track with her eyes and SHE COULD SMILE! Sweet little Krisha could actually smile in spite of everything! All these were indications that her brain was definitely functioning. However for now exercise was crucial for her, so that her muscles and joints did not stiffen.
The doctor who had initially spoken to us also felt that the prognosis initially was probably a bit extreme. She seemed to be showing tiny improvements every day which was very positive and having her mother around more was helping! How happy that made me - at least I could do something for her!
Steadily her feeding through the bottle was also increasing, some days were better than others but at least we knew that she could do it. Now it was a matter of time and practice. All of a sudden we were hopeful again – once more Krisha had come through stronger and more than we expected.
The week we were to take her home really seemed unreal - we were being briefed by doctors on how to care for her, given CPR training to handle emergencies, briefed on her medications, exercises etc. It was Friday 11th of June when the blessed day finally arrived and we could take our darling baby Krisha home with us. It seemed so right and normal to be finally carrying her to the car and driving her back with us.
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